4 things I love about blogging

As a follow-up to last week’s post on 4 reasons why I hate personal blogging, I wanted to spend some time discussing why I love personal blogging.  Just for fun, here’s another listicle where the items are much longer than they should be.

1. I love to write

I’ve always loved writing and, for the most part, I’ve always written.  As I said in last week’s post, I’ve kept some sort of personal blog for over 20 years now.  Aside from that, I have written in many other formats: research papers, school newspaper articles, legal reports for probate courts, archival finding aids, essays, literary criticism, short stories, tip sheets and training materials, marketing materials, project plans, correspondence, and policies and procedures.  There are probably a few more items in there, but I’m sure you get the idea.

Whether for personal, academic, or professional tasks, I have written a great deal over the course of my life.  Writing is, without doubt, my preferred means of communication.  Of course, some of that writing has been less fun to slog through, but if I’m working on a project that requires writing, that will probably be my favourite part.  Essay and report writing, in particular, have always been the most fun types of writing for me.  Though I have tried, I’ve never much liked writing fiction or poetry — I’ve never seen myself as a person with a great creative imagination.  I’m best at reporting what I know, whether it be through research or personal experience.

2. Blogging allows me to keep my skills fresh and make improvements in my style

To be good at writing, you need to practice.  My current job is quite writing heavy, as I need to produce some kind of reporting product for most of my research files; however, those reports are heavily templated and rigid in terms of language and formatting.  Keeping a personal blog allows me to continue writing in a way that helps me get out of the formats I need to stick with at work.  Personal blogging has also helped me to clean up some of my bad habits over the years.  For example, I will probably always be a rambler and I will always use too many adverbs, but proofreading my blogs over the years has stopped me from writing “really” every few sentences (or more).

3. It provides me with a place to express my views and opinions, while providing me with a record of myself and my feelings during a particular time.

Even if reading through old posts later on often makes me cringe.

4. Blogging has helped me to become a more adaptable writer

At my current job, I have seen firsthand that many smart university graduates can struggle with transitioning their writing from a style that works for academia into a style that works in a professional setting.  This has never been a problem for me, because I’ve always written outside of what was required of me at school.  Even if it was just to rant about hassles or drama in my personal life, being able to structure and write something informal that wasn’t a research paper has always been useful.

I also believe that the more often you write and the more different types of writing projects you take on, the less attached you are to one particular style.  Of course, all writers will have their own preferences in terms of vocabulary and sentence structure (hopefully they have a good grasp on both), but the best writers, in my opinion, are able to relax their own preferences and adapt to the task at hand.

I hope you’ve enjoyed this miniseries on what I love and hate about blogging.  Do you enjoy writing in your free time?  Is it one of your least favourite things to do?  I’d love to hear about your experiences with writing or blogging!

 

4 things I hate about blogging

In my next two regular posts I want to spend some time discussing what I like and dislike about personal blogging. Since I’m feeling a bit overwhelmed at the moment with the new puppy at home, I’d like to vent a few of my frustrations before focusing on the positive aspects of what I’m doing and why I enjoy it so much. I’d like to just quickly note that, for the purposes of my next two posts, the type of blogging that I’m going to be talking about is personal, hobbyist blogging: i.e. blogging with little or no intention to monetize or market a business.

1. Choosing topics

If you have a blog about something in particular, topics can be quite easy. If you want to have a blog about video games, for example, you can probably generate at least a few post topics per week, because you can write about gaming news stories, gaming culture or about games that you’ve been playing recently. For me, writing a personal blog that is just about me and my life, without a real topical focus, is a little challenging.

Part of this problem is that I have lots of options for topics, but they’re not always things that I’m ready or willing to discuss publicly. I want to choose topics that are of interest to me, but that also might be of interest to the audience I’m communicating with, even if I’m not wholly certain of who that audience might be. The public at large doesn’t need to know that my mother and I had an argument on Tuesday or that I had a crappy week at work. Finding topics that allow me to express my thoughts and feelings without being too personal can be a bit tricky at times, especially since I’m currently trying to write two essay length posts per week.

2. Listicles

Did you notice the clever title of this blog? Does it sound like anything you’ve read before? I’m sure it does. The listicle has permeated our culture and online vernacular: it is ubiquitous. We are all guilty of reading them and now I am finally guilty of writing one. I can understand why they’re so popular from the perspective of both readers and writers: they’re easy. It requires very little effort or skill to write 1 or 2 sentences about pretty well anything and even less effort or skill to read and analyze 10 bullet points.

I read just as many listicles as anyone reading this (probably more) and, for me, they make personal, essay-style blogging a bit difficult for a few reasons:

  • They are so easy to write that I actively have to discourage myself from writing them (I’m trying to challenge myself to be at least a bit succinct in a formal, paragraphed style).
  • They’ve had a hand in lowering the internet’s attention span, thus making it more challenging to get eyes on long form, paragraphed content.
  • Most blogging prompt resources have nothing but listicle prompts because they are geared toward monetized, professional blogs, where listicles belong.

3. Narcissism, or the appearance of narcissism

Obviously, I believe that personal blogging is valuable and I enjoy doing it, but sometimes you just get sick of yourself and you worry about your readers getting sick of you as well.

4. Privacy concerns

I’ve been blogging for roughly 20 years. I’ve been thinking about writing, and may still write, about my relationship with blogging and how it has changed over the course of my adult life. The internet has changed so much during that time and the blog I started with was nothing like the blog I have today. I built a website using Netscape Composer and would post essays that I had written, some for fun and some for my high school newspaper. Since those humble beginnings, I have had at least 5 other blogs.

I’ve never shared any of those blogs with people in my offline life. My blogs have always been a part of my online life, which, for the past 20 years I have generally kept separate from my life offline. For the most part, this allowed me to remain anonymous, which provided me with a great deal of freedom. I could write about whatever I wanted, complain about whatever I wanted, contemplate out loud whatever I wanted, without worrying about hurting any feelings or offending my family or offline friends.

These days, things aren’t that simple. The emergence of social media has meant that my online and offline lives have been blurred together in ways that have often made me uncomfortable. I’ve grown accustomed to hiding significant aspects of myself from the two disparate halves of my life over the years and now that I am actually sharing my personal writing on Facebook, the stakes have become even higher. I don’t feel like I need to censor myself too much, but I do feel the need to be more careful about my writing than I have in the past.

Personal blogging certainly does have its challenges and I’m sure that I will run into further frustrations down the road, but as I mentioned above, I do enjoy it. On Tuesday I will be exploring some of the reasons why I keep a personal blog and why I have loved doing it for so many years. Please look forward to it!

Cancer/life update: struggling at the halfway point

This Friday (March 2, 2018) I will be having my sixth chemotherapy treatment, which means that I will be halfway through my original treatment plan.  My second chemo cycle (one cycle is two treatments) was difficult.  The neuropathy in my hands became less uncomfortable due to the lowering of my Vinblastine dosage, but those two treatments just made me feel sicker: more nausea, more fatigue, more gastrointestinal upset, heart palpitations and anxiety.  I was worried that I was going to feel progressively worse after every treatment.

Fortunately, the first treatment of my third cycle wasn’t as bad.  I was able to leave my house on the Monday after, which is pretty rare for me, to pick up our new puppy, Frankie.  Since then, symptom-wise, I’ve had one of the best periods between treatments since I started chemo in December.  During my last visit with my oncologist, I even received the news that if my next PET scan (now scheduled for April 7) doesn’t show any remaining active disease, two drugs will be removed from my protocol: Bleomycin and the steroid that goes along with it.  This would be fantastic, since Bleomycin has the nastiest long term side effects and the steroid I am given to prevent me from having an allergic reaction to Bleomycin raises my blood sugar and is the most likely cause of my heart palpitations post-treatment.

With all this great news, I should be feeling awesome, especially since I have a new puppy in the house, but I am struggling: mostly with Frankie.

My mother and I haven’t had a puppy for 15 years and, needless to say, we had completely forgotten how difficult it is to raise one.  It doesn’t help that we were a little spoiled with our last dog, Daisy.  For example, she was at least partially crate trained before she came home with us, she had excellent bladder control, and, being a terrier, she was smart and easy to train.  We kinda took it for granted that we knew what we were doing.  Frankie had only ever been in an activity pen and had only been outside a few times before we brought her home.  She had accidents in her crate nearly every night because she had no idea it was her bed and we figured we would toss her in there and she would just understand how it worked, exactly the same way Daisy had.

We are definitely doing the best that we can and the strategies that we are now using to crate train and house train are working, but it’s been very stressful for me.  I keep worrying that I’m going to make mistakes that will give her bad behavioural habits and every time she has an accident inside, I feel as though I’ve failed her somehow.  The guilt is also difficult.  Whenever you get frustrated at your puppy, you feel terribly guilty about it, because we all feel like we need to love and adore them all the time.

I also have other worries about the logistics of managing everything during chemo weekends, since my mother’s mobility issues are worsening recently.  I won’t go into any detail about this, but it’s made sleeping difficult: I am so worried about chemo, my mother, and Frankie that I haven’t been sleeping well.  Over the past 2 nights, I’ve probably only gotten about 7 hours, which isn’t great for a person who is undergoing chemotherapy.  I’ve been laying awake in bed worrying and feeling anxious.

Sleep deprivation + worries about raising a puppy + cancer and chemo = stressful combination.  Up until now, I have managed the stress and emotional difficulties of cancer and chemotherapy quite well, but the addition of everything else has made me hit a wall — it’s all catching up with me at once.  I’ve started reading an ebook that I think will help me to process the puppy stress, but I think it’s going to take me awhile to get used to everything and get over the guilt.

Update: I wrote this on Monday, February 26.  It’s now Tuesday the 27 and I had a great sleep last night.  I’m feeling a bit better about things, but we have a long way to go.

 

Me and Prufrock’s Love Song

I love T. S. Eliot’s poem “The Love Song of J. Alfred Prufrock.” It’s been one of my favourite works of literature since I first heard it read on my first day of university in the fall of 1999. My English 101: Introduction to Poetry professor (whose name I don’t remember anymore) played us a recording of T. S. Eliot reading the poem himself. His accent was odd and his reading plodding, but I fell in love with it and I’ve been in love with it ever since.

I’m not really a nostalgic person. I don’t watch movies or read books from my childhood or even think about them particularly often. I know that many point to the books they read as a child and speak about how important they were in the formation of their adult selves, but that has never clicked with me. I look back at those books and movies and TV shows with some fondness, but I have little interest in revisiting them. I don’t really consider them to be particularly important in my development as a person, even though I did enjoy them heartily at the time. I would say that this is partly because I believe I have changed significantly over the course of my life and also because I like to move on to new things: keep learning, keep evolving, keep sucking up new knowledge.

But I have lugged Prufrock around with me for nearly 20 years now. It’s really almost humorous, because for many years I spent very little time thinking about what the poem might actually mean. I liked letting the words be what they were. I became remarkably skilled at reading Prufrock aloud (mostly to impress men I was interested in), but didn’t really understand what I was saying. I’m not sure we can ever know what any poem truly means unless we ask the poets themselves and they deign to tell us. We can interpret and guess, but I always believed inferring authorial intent to be a little dangerous. These days I do have my opinions about what T. S. Eliot might be getting at, or at least what the words suggest to me.

Prufrock is a rambling and contemplative journey where a person is exposing and then accepting various truths about themselves. I did some reading online a few weeks ago and it seems that the central debate about Prufrock revolves around the “overwhelming question”:

Let us go then, you and I,
When the evening is spread out against the sky
Like a patient etherized upon a table;
Let us go, through certain half-deserted streets,
The muttering retreats
Of restless nights in one-night cheap hotels
And sawdust restaurants with oyster-shells:
Streets that follow like a tedious argument
Of insidious intent
To lead you to an overwhelming question …
Oh, do not ask, “What is it?”
Let us go and make our visit.

Whenever Eliot mentions this overwhelming question, it always seems to be something that the narrator is working up to, something that the story is moving toward. Personally, I’m inclined to think that the overwhelming question is a marriage proposal or confession of love. It seems simple, but it makes sense to me based on how the the concept appears throughout the poem.

Regardless of what the overwhelming question might be, the poem has many powerful moments that I think can speak to any of us, no matter where we might be in our lives. My personal favourite excerpt, which has been a great companion over the years and which has taken on a great deal of new meaning recently is:

“But though I have wept and fasted, wept and prayed,
Though I have seen my head (grown slightly bald) brought in upon a platter,
I am no prophet — and here’s no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat, and snicker,
And in short, I was afraid.”
While I have spent a good amount of time in my life being a self-important asshole, this stanza has always reminded me that, while my life may be of great importance to me and those who love me, my existence, in the grand scheme of things, is not particularly important. This is not to say that I am powerless and that individuals can’t accomplish things on their own, because I wholeheartedly believe that that is not the case. But it is a reminder of the importance of humility and that, even when you experience great hardship, the world will continue to turn without you: I am no prophet — and here’s no great matter.
Do you have a favourite poem? Is there a fictional work that is a constant companion for you? I’d love to hear all about it! Post a comment below or let me know on Facebook or Twitter!

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.

Me and Feminism

rosieAs a young woman in my late teens and early 20s, my feminism had three main tenets: I was rabidly pro-choice; I was interested in LGBTQ rights; I didn’t want to be a housewife like my mother.  The third idea culminated in a sort of “bad bitch” attitude of privileged, second-wave feminism that, in my opinion, was  damaging to me and my progress as a person.  I completely rejected the nurturing side of myself:  I refused to do housework, I refused to learn how to cook.  I could get a partner who could do those things for me — I was a career woman and would never be trapped into servitude like my mother.  I was way too smart for that shit.

Quick side bar: my mother actually worked from home for most of my youth and only stopped when her parents needed care.  When my father left my mother in 2002, she had seen the writing on the wall, gone back to school, and was able to get a decent job as an admin in a mental health centre.  I’m not sure why I was so attached to the idea of my mother as a full-time housewife, but I think I probably just wanted to be a career-focused person and I didn’t want to get stuck in a shitty relationship for as long as my mother was.

I was also not ready to make any effort to understand true inequality (I’m not even sure I would have been capable of it at the time).  I wanted everyone to have equal rights, but I also felt as though many of the more difficult battles had already been fought and won.  I was naive enough to believe that we were living in a post-racist and post-sexist society where the only rights that really needed defending were LGBTQ and abortion rights.  In some ways, this is not particularly surprising.  I’m white, I grew up in an affluent household, I was a spoiled only child and I was never told that I couldn’t do things because I was a woman.  The only real adversity I had ever had to face was some family drama and my emotionally abusive father.

My “bad bitch” attitude softened a bit over the next few years.  My parents split up and my life got a bit crazy.  I was working two part-time jobs, going to university part time and helping to look after my father’s father.  I had a boyfriend and I tried to have a social life.  This didn’t leave me with any space for politics: lot of aspects of my life were serious and important and I wanted to have fun in my spare time.  This was when I started to become more closely involved in fandom.

When I say fandom, I’m nearly always referring to the female-dominated sector of fandom, where most fanfiction comes from.  What many male members of the video game community probably don’t realize is that discussions about diversity, equality and representation in fictional media started popping up in female-dominated fandom communities years prior to the emergence of figures like Anita Sarkeesian and Zoe Quinn, who would push these issues to the forefront of video games.

My response to those discussions was always politely dismissive: I wasn’t interested in political discussion getting in the way of my fun.  Fandom was my escape from the heaviness of my everyday life and, at that time, I needed to keep things light.  My reaction to those discussions and politics was quite similar to the video game community’s reaction to Anita Sarkeesian’s Tropes vs. Women Kickstarter campaign: I wanted them to stay far away from me.  The big difference being that I just avoided those discussions rather than going to online forums and uttering death and rape threats.

I’m not a huge fan of Anita Sarkeesian, but I credit her with being the lightning rod that inspired the development of my true feminism.  When the controversy over her Kickstarter campaign began, I was horrified by the kinds of behaviour and comments I witnessed in communities where I had previously felt welcome.  For example, I had been an active member of the Giant Bomb community since the site had started and the forums had always been a place where I felt comfortable hanging out.  The reaction to the Tropes vs. Women Kickstarter campaign, however, made me feel completely unsafe.

Thousands upon thousands of men in the video game community flocked to Anita Sarkeesian’s website and social media accounts and threatened her with death and rape.  They subsequently flocked to popular video game forums to talk about what a bitch she was, how ugly she was, how stupid she was, and how she had no right to voice her opinion about video games.  Some even attempted to dox her and prove that her family was affluent so that they could approach Kickstarter and report her campaign as a scam (there was a huge thread on Giant Bomb that was devoted to this that was, thankfully, deleted).

If all this was done in response to a series of YouTube videos that probably wouldn’t even be widely viewed, what would these men say to me if I disagreed with them?  What would happen to me if I agreed with her arguments?  What if I questioned the representation of women in video games from my own perspective?  Would they speak to me this way?  Would they threaten and bully me? Of course they would.  They had given me no evidence to the contrary.

It was this horrible reaction to Anita Sarkeesian that made me realize that we were not living in a post-sexist society.   From there I started actively trying to gain a better understanding of inequality.   I read books by marginalized authors and I read feminist literature and contemporary memoirs.  My mother needed my help and I became her full-time caregiver for a year.  I taught myself how to cook and how to bake (turns out I’m pretty damned good at both).  I volunteered at a women’s shelter.  I finally started to embrace the nurturing part of myself and I allowed myself to see that there were people in the world that I needed to fight for.

In many ways my accepting myself as a nurturer was akin to accepting my femininity, something that I had never been able to do.  While this was a stepping stone in my feminist development, I have actually arrived at a place beyond that.  While activities like cooking can be caring and nurturing, it is incorrect to assume that caring and nurturing are inherently feminine.  Radical feminist author bell hooks (yes, her name is all lowercase) has written extensively about the fact that loving and nurturing should be natural to both men and women and it is our gendered view of society that limits those traits to women.  If we think about cooking from this perspective, cooking isn’t a feminine activity that comes naturally to women because they are caregivers.  Cooking is a life skill that we should all learn in order to care for ourselves and the people we love, regardless of gender.

Men and women are different, but I believe that removing gendered preconceptions from my life makes it a lot simpler and prevents me from limiting my options.  Within myself, I have the capacity to accomplish a great deal, especially if I can move past society’s, and my own, preconceptions of what I should be.  As I write this, I am 36 years old — soon to be 37.  I discovered my true feminism a little later than some and it has been a long and arduous process.  I know that I will still make mistakes from time to time and that my views will continue to evolve, but I am proud of how far I’ve come.

 

 

 

 

Chemo, the holidays, and kindness

I survived my first chemotherapy infusion.  I have a lot of feelings and observations about how it went.  Some aspects were perfectly fine and others were bad.

Best of all was that the physical effects weren’t terrible for me.  I expect that they will get worse as treatment goes on (I know the fatigue, in particular, tends to compound the more infusions you have), but for now everything is manageable.  While the drugs were dripping, I began to feel exhausted and this continued on for several days afterward.  The first day after my treatment (Saturday the 23rd) I felt well enough to run a few small errands with my mother, but I definitely paid the price for that over the next few days.

Throughout the holiday, I was mostly napping.  I got up to eat and I was, thanks to my four anti-nausea medications, able to enjoy all of the nice food, but the days mostly felt a bit wasted.  It’s difficult for me to feel like I’m wasting all of this time.  While I know that I have cancer and my body needs rest, this might be the last significant stretch of time I have off work for many years.  I have been hoping to make the best of it and enjoy it as much as possible.  For me, sleeping all day  isn’t fun and it makes me feel like I’m not being productive.  Hopefully I can manage to moderate the expectations I’ve set for myself and come to terms with what my body needs.

The most difficult aspects of recovering from my first chemotherapy treatment were personal and social.  The day itself was a bit tough because my father had insisted on going with me.  My father and I have a difficult relationship.  While he was (surprisingly) on his best behaviour, he just isn’t the type of person you want to be with you for something like chemotherapy.  He’s jumpy and manic and can’t settle down, and he expects you to entertain him.  I have had a lot of folks offer to come with me to chemo and my only request for everyone is that they bring something to entertain themselves in case I don’t feel like talking.  As I said above, I learned during my first infusion that the fatigue starts as the drugs are dripping, so this is even more necessary than I originally thought it would be.

It also didn’t help that he repeatedly asked me How does it feel? like I was a science project.

I was on the receiving end of a great deal of kindness over the holidays.  An old friend’s father, a testicular cancer survivor, dropped by to see me on Christmas Eve to visit.  One of my mother’s closest friends, a former coworker who is Taiwanese, came over on Christmas Day and brought, along with her family, a huge, home-cooked Chinese feast to share with my mother and I.  Mei’s husband, Jack, is also a cancer survivor, and had a great deal of advice and compassion to offer.

This all sounds great, but there were downsides as well.  While I was greatly moved by the kindness shown to me by my friends and family over the weekend, it was also difficult to process their treatment of me.  There was a lot of We should get going, you must be tired and you must be so exhausted after such an ordeal.  This is excluding all of the overly sympathetic looks hinting at my current fragility.  I can’t even begin to express how amazing it is that the people in my life are trying to be respectful of my condition and ensure that they’re not being burdensome, but I also am not going to fall apart or die at any second either.  This is definitely something that I will need to work out on my own.  I can’t expect everyone in my life to react exactly the way I want to my situation.

I think the crux of the problem is that I’m not accustomed to accepting greater gestures of kindness; though, to be honest I’m not sure anyone really is.  Day to day small things are typical for sure — my mother drives me somewhere for a small errand or my boyfriend helps me choose a lap desk.  More significant gestures of kindness are, I think, foreign to most of us.  How often does a friend cook us a beautiful Christmas dinner and bring it to our home so we don’t have to spend the holidays alone?  These things don’t happen every day and the people around you see you struggling, they tend to step up in ways that can make you feel a little uncomfortable.

It’s incredible isn’t it?  Generosity and kindness making me feel uncomfortable.  I don’t know whether I should be thrilled to receive it, or sad that it doesn’t happen regularly.  Or even worse, sad that it might stop when I get better.  As I said above, I think this is something I’m going to need to work through over the course of my treatment.

Chemotherapy is terrifying

Everything is moving so quickly now that it’s been tough for me to keep up.  Lots of appointments and procedures to prepare for my cancer treatment endgame: chemotherapy.  For the next six months, I will be receiving two (2) chemo infusions per month, for a total of twelve (12) infusions.  The hope is that this will completely cure my cancer; however, given that I’m stage IV, there’s a chance that I will need further treatment once my chemotherapy is completed, such as a bone marrow or stem cell transplant.  I’m trying not to think too much about the other treatments for now as I feel it’s better to focus on the task at hand (though I am mentally preparing myself for the fact that I may need further treatment).

Yesterday I had surgery to install a port, which is a permanent IV — a central line to administer chemotherapy and other drugs.  While I am pretty sore today and finding it a little difficult to move, I am overjoyed to have a port.  Prior to my surgery yesterday, it took three (3) nurses and six (6) attempts to start my IV for the procedure.  The pain of being poked repeatedly doesn’t bother me too much, but it causes a great deal of anxiety and stress — things I don’t need more of at the moment.  Not to mention the fact that one of the drugs in my chemo protocol (decarbazine) burns your veins if delivered though a standard IV.  Yes, please, I would prefer to avoid that.

My first chemotherapy treatment is tomorrow and I’d say I’ve prepared as much as I can.  I’ve picked up my anti-nausea medications and the other drugs I need to take at home.  I have also prepared the items that I plan to take with me to the hospital tomorrow for entertainment (it takes a few hours to administer all of the drugs).  Of course, I’ve prepared several options since I’m not sure how I’ll be feeling as the drugs are dripping.

Physically, I’m completely prepared.  Emotionally, I’m a mess.  I’m terrified.

My main fear is my hair.  The standard chemo protocol for Hodgkin’s Lymphoma (the drug combination is called ABVD) causes hair loss.  Some folks who have strong hair only experience some thinning, but my hair is quite fine, so I expect that I will lose it all.  When I first found out I had cancer, I didn’t think that hair loss would bother me.  I knew I wasn’t going back to work until my treatment was completed and, not being a particularly social person, I figured I wouldn’t be going out very much.  My partner has also been completely supportive and isn’t worried about it, so I didn’t feel like I needed to worry about it either.

And then my mother went to have a hair cut and our stylist mentioned to her that I should cut my hair short before I start chemo.  In her experience, many women have an easier time coping with hair loss from chemo if their hair is shorter beforehand.  This got me thinking a lot more about the repercussions of hair loss and it started to hit me a lot harder.  What happens when I want to go out for a nice dinner with my boyfriend?  Do I wear one of the toques I’ve knitted for myself?  I will definitely get a wig, but I still feel like this loss will be difficult for me to accept once it starts happening, especially if I can’t find a wig that breathes well and doesn’t bother my sensitive skin.

The rest of my fear is more general.  I’m worried about what chemo will do to my sensitive skin, my nails.  I’m worried about nausea and the possibility that I might have a metallic taste in my mouth all the time.  And I’m worried about cognitive dysfunction.  I plan to spend a great deal of time writing during the next six months and I don’t want those plans to be negatively impacted by chemo brain.

I’ve read accounts written by survivors and, while it’s helpful to learn about the experiences of others, everyone is different and everyone reacts to chemotherapy differently: some folks have a more difficult time than others.  I guess I’ll start finding out tomorrow.

 

Cancer and my friendships

Before I get started for today I should probably add a disclaimer stating that this post is about my friends that I know in person, most of whom I grew up with and have known for over twenty (20) years.  I should also point out that I have struggled to make new friends since I finished my Masters degree in 2008, mostly due to my being frequently unemployed and also having terribly low self-esteem.

Over the past few years my friends have mostly forgotten about me.  Years ago, I realized that I was always responsible for organizing everything.  I called everyone, I scheduled everything, I did all the work.  One day I decided that I would engage in a little experiment and stop working so hard, hoping that my friends would call and make plans with me instead.  Unfortunately, it didn’t work in my favour.

There are a lot of complicated reasons for why my friends drifted away from me.  Many  got married and had children and their lives became busier; some moved away; some just didn’t want to be friends with me anymore.  It probably didn’t help that I was single by choice and often unemployed.  This made me difficult to fit in at couple-focused social gatherings, often quite depressing, and sometimes a threat to insecure spouses and partners.  It was also, I think, hard for some of my friends who were interested in marriage in children to understand why I wasn’t particularly interested in those things and perhaps they felt like we didn’t have much in common.

This situation has changed drastically since my cancer diagnosis.

Recently, I’ve received a glut of messages and support from friends I had hardly heard from at all over the past five (5) to ten (10) years.  In many cases, the support and contact has been kind words and responses to my posts on social media.  This has been lovely.  It’s low-impact, I don’t have to talk to everyone personally, and I can be buoyed by the knowledge that there are a bunch of folks out there rooting for me and hoping that I will recover well.  This has helped me stay positive.

Even better are the work and school acquaintances who have come forward to me with their stories of surviving cancer.  The advice that they have offered me about living with cancer, such as managing the side effects of chemotherapy, has been incredibly helpful to me and I am terribly grateful that they reached out to share their wisdom.

I have also had some wonderful contact with friends I drifted from mutually due to distance.  After some heartening messages, it is my hope that I’ll be able to see some of those people when they next visit home.

While all of this is wonderful and I am grateful to all of the people who have reached out to me over the past two months, I do (reluctantly) have mixed feelings about some of it.  First, as someone who is accustomed to not being particularly high on people’s priority lists and to not having much social interaction, it can be a bit exhausting to respond to everyone.  This is especially true with some friends who have a tendency to be a bit overbearing and like me to operate on their pace and terms.  Being sick and run down doesn’t help with this either.

Second, and I don’t like admitting this, I do feel some resentment toward a few of my old friends.  It is frustrating to think that it took something so extreme to finally garner their attention, to move me up on their priority lists, and to be considered worthy of their time and attention.  The fact that I feel this way is troubling to me, but I think that after everything, it’s not entirely unnatural.  I hope that I will be able to get over this and, in time, repair some of those relationships.

Overall, I have been a bit overwhelmed by the support that everyone I know has offered me — in a good way.  Most of it has been tremendously helpful and all has been appreciated.  I start chemotherapy on Friday (December 22) and I will need all the strength I can get — both from within myself and from those who are rooting for me.

 

 

The results are in

I had intended to make this post a little sooner, but I needed some time to process a lot of the information I received at my last oncology appointment.  Once I was ready to start writing again, a bad cold and some awful emotional stress got in the way.  Needless to say, I have a lot of topics already lined up for future entries.

My official diagnosis is Stage IV Hodgkin’s Lymphoma.

Stage IV is what you generally don’t want to hear.  It means that the cancer has spread to another system of the body.  In my case, it has spread to my bone marrow.

Despite all that, my oncologist is still optimistic about my case and believes that my prognosis is good, particularly due to my age and the fact that am still able to accomplish ordinary tasks.  I also have not had any real symptoms of lymphoma at all, though I have been having night sweats the past few days, which is a common B symptom of Hodgkin’s.

Even with a good prognosis; however, this is horribly scary and everything seems to be moving too slowly again.  I need to have two procedures prior to starting chemotherapy: a bone marrow biopsy and a portacath installation.  The bone marrow biopsy is tomorrow morning and will establish a baseline for what my bone marrow looks like prior to chemotherapy, in case they need that information for further testing down the road. My portacath installation is December 20th.  A portacath is basically a permanent IV — a button is inserted under the skin in your chest so that an IV line can easily be inserted whenever necessary.  I’m grateful to have one installed, since I’m a difficult person to start IVs on, but I believe that the date will delay the start of my treatment until after the holidays.

I have seen posts by survivors in online cancer forums saying that many have had their first treatment on the same day they had their ports installed, but I’m not sure if that will be the case for me.  I have mixed feelings about this. I’m not thrilled at the prospect of being chemo-fucked at Christmas dinner (and honestly chemo scares the shit out of me), but I also don’t want the cancer to spread more than it already has.

The only things I’m really sure of right now are that I’m scared shitless and my life is never going to be the same after this.