Taking a nice, long break

To start this post off on a positive note, I just want to announce that my long term disability application was approved today.  As I’ve mentioned previously, the application process has been long and stressful and I’ve been living without any income or savings for several months.  I’ve been planning hypothetically, based on a number of outcomes, how I was going to deal with my current financial situation and I’m extraordinarily grateful that I got the best of all the outcomes.  If I manage everything responsibly, I’ll be in a great position to start moving forward with all of my financial and life plans when I return to work, rather than being in debt with no savings and having to start over from scratch.

Prior to receiving my cancer diagnosis, I often scoffed at the cost of my long term disability benefits.  No more.  I know that they seem expensive, but if you are ever in a situation like mine (and anyone can be), you will be terribly happy that you have them.  Sometimes life throws curve balls at you and cancer can happen to anyone, even if you have no family history at all (which I don’t).

Now that I’ve dispensed with the happy news, it’s time to move on with the less happy news.  As I’ve said on social media and to friends privately, my health has been declining significantly over the past few weeks.  Because of this, writing has become much more difficult.  My low energy levels have been sapping any desire to be creative at all.  Coming up with topics to write about has become an exercise in pulling teeth and once I get started on writing something, I don’t feel attached to or interested in it at all.

And this is all okay, I expected that this would happen at some point.  I think the best thing to do is to take a step back.  I’m taking all of these feelings as my body’s way of telling me that I need a good, long break.  I need to rest and let my body do what it wants for my last two treatments so that I can begin to recover.  I’m going to focus on reading, resting and taking care of myself as best I can.

I can’t even begin to describe how happy writing has made me over the past six months.  I managed to mostly keep to my schedule and write essays that I am (mostly) genuinely happy with.  I am terribly proud of myself.  There were a few folks in my life who doubted that I could keep up with writing for so long during treatment and I can’t tell you how happy I am to have proven them wrong.

Thank you to everyone who has read what I’ve had to say during this time.  I’ve been writing for myself — just writing to write — but it’s been a tremendous boost and comfort to me to know that some of you have been reading and considering what I’ve had to say.  I will always be grateful for your time, attention, and kind feedback and comments.

If I have any significant updates to share or if the mood to write strikes me suddenly, I’ll definitely be posting.  Once I’m feeling better, I hope to resume a regular, if a little less frequent, posting schedule, but we’ll see.  Take care, everyone!

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Things you should do for your friend who has cancer

I’ve come a long way over the past six months.  My journey with having cancer so far has taught me a lot of important lessons and I have learned a great deal about the disease, about myself, and about the people around me.  There is no doubt that I have been fortunate enough to receive a great deal of support from my partner, friends, and family and I am and always will be grateful for that support.  There have been a good number of missteps along the way, however, and I wanted to spend some time over my next two posts discussing the right and wrong ways to go about supporting your loved one who has cancer.

1. Ask them what they need from you and follow through.

Your friend or loved one has cancer and it’s not about you, it’s about them.  The best thing that you can do for anyone who is suffering in some way is to ask them how you can help.  Chances are you’re going to get a response that is remarkably simple and easy for you to accomplish or they won’t really ask you for anything at all, but they will be extraordinarily appreciative.  If they do ask you for something, make sure you follow through and actually do it, it will make your loved one’s day, week, month or even year.

Letting your loved one know that you are ready to take action for them rather than just offer words of support from time to time is remarkably powerful.  In general, I would say that this is a great thing to do if you want to be an ally to any person who belongs to a marginalized group, whether they have a chronic illness or disability or if they are a person of color, fat, queer, non-binary, etc…

2. Listen and absorb.

While it’s pretty well guaranteed that you already know someone who has cancer, has survived cancer, or who has died of cancer, your friend’s treatment plan and side effects will likely be phenomenally different from that other person or people you know.  Unfortunately, because cancer treatment and side effects vary so much from person to person, we tend to oversimplify the whole experience into hair loss, nausea and fatigue.  In reality, your friend has a lot more going on than what what is typically depicted on television and their treatment could be quite different from what you’re used to seeing.

Because of all this, most people who are diagnosed with cancer automatically become educators and if your loved one is explaining something to you, chances are they’ve had to explain it to everyone else they know.  As such, you should pay them the courtesy of listening to what they have to say and absorbing it.  It’s okay to ask questions (as long as they’re not too invasive) and get clarification, but you don’t want to force your friend to repeat themselves too much.  Letting your friend know that you’re really listening and understanding will make them feel loved and supported and also make their lives a lot easier.

3. Make an effort to talk to them and/or hang out with them.

Sometimes cancer treatment can make you feel isolated.  Even if you feel like your friend or loved one is an incredibly positive person who is managing everything like a pro, chances are they’re actually falling apart on a fairly regular basis.  It can be hard to reach out sometimes.  We don’t want to feel like a burden or we feel like our friends have enough to deal with, particularly if they all have children, marriages and full time jobs to manage.  Sometimes the best way to show someone that you support them is to just make a small effort to contact them.  You don’t need to spend hours on the phone with them every day or reschedule your whole life around them: send them a text message from time to time to let them know you’re thinking about them or ask them out for a coffee and chill for an hour.  This is the time that you want to let your friend know that they’re important to you — it will make a significant positive impact on their mental health.

I hope that someone out there might find this a bit helpful.  Next Tuesday I’ll be moving on to discuss a few things you shouldn’t do for your friend who has cancer.  Please look forward to it!

Goals for 2018: Part 2

Today I’ll be continuing my short series on my goals for 2018!  If you missed the first post, please read it here.

6. Care for myself mentally.

It’s no secret that I have issues with depression and anxiety and my current health crisis means that I will have to work at looking after my mental health this year.  I will have my bad days, but it is imperative that I keep up a positive (or at least neutral) attitude more consistently than usual.  I have several plans to assist me in accomplishing this.  First, I have been referred to the BC Cancer Agency’s counselling department, so I will be getting some professional help that is designed specifically to assist me in coping with cancer and treatment.  Second, some of the aspects of my journaling routine are focused upon positive thinking, affirmations, and gratitude.  Third, I have loads of video games to play, books to read, TV shows to watch and a forum to express how I feel about them.  I’m the most excited about that part!  Fourth, it is my hope that I will finally start working through the CBT (Cognitive Behaviour Therapy) workbook that I purchased earlier this year when I had my first panic attack.

7. Learn Something New

As I said in Goal #2 (Write as much as possible), it is my hope that I will be able to devote some small amount of time during time off examining how I can make career change to something that is more flexible and location neutral.  While I know that I can probably make some income with freelance writing, I would like to explore some other avenues that might be a bit more fruitful.  I plan to research and take some courses via educational websites such as Skillshare to see what kinds of skills will be necessary to obtain the kind of job that I want.  I’ve always been a fan of throwing myself up steep learning curves and I feel like now is a good time to start.

While I am enthusiastic about this goal I am, unfortunately, not certain how much I will be able to work on it.  My ability to take courses and learn things might be diminished by chemotherapy side effects.  I’m willing to give it a try, however, and I know that, from a practical perspective, it will be easier to do this when I am not working full time.

8. Create and maintain tidy spaces in my home that I can be happy spending a lot of time in.

I am an extraordinarily messy person.  Super organized and terribly messy.  While my messiness is consistent, it tends to get a lot worse when I’m depressed.  I would like to work toward making a significant change in this area in 2018.  While I am in treatment, I will not be returning to work, thus I will be at home most of the time.  If I’m going to spend most of my time in my office and my bedroom, I think it’s important that I try to keep them tidy so that I will enjoy my spaces and feel less stressed out and sad that they’re a mess.  I’m not exactly sure how I’ll be accomplishing this one, but I will start making some more specific plans and strategies over the next week or so.  I do already have some de-cluttering projects in mind.

9. Leave the house to work at least once per week.

This depends a bit on how I’m feeling, but I think it’s important for me to try and get out of the house at least a few times per week.  I can get a lot of work done in a few hours of crowd buzz and good music, so it’s worth it for me to get out and work in a coffee shop or somewhere similar.  I have a great little Chrome book that’s great for basic writing and web browsing on the go.  It’s my hope that I’ll be able to get out and work more than once per week, but I like to keep my goals as manageable and realistic as possible.

10.  Be supportive of and express gratitude to my partner and maintain a healthy and loving relationship.

A serious illness like cancer can have a significant impact on your romantic relationships.  Right now, my illness consumes a lot of my time and energy and it’s important to me that I don’t allow it to bleed too much into my relationship.  Of course, I will share my thoughts and feelings with him and I am counting on him to listen to me, be respectful, and provide love and moral support.  What I can’t do, however, is forget that he also needs love and moral support — I plan to do my best to make sure that his needs are being met and that everything isn’t about me being sick.

Have you set your goals yet for 2018?  Is there anything that you’re hoping to accomplish this year?  Leave a comment and let me know or message me privately — I’m interested to hear about what you’d like to get up to.  Let’s all have a better year than we did in 2017!

Goals for 2018: Part 1

It’s been a tough few days.  Chemotherapy side effects have been hitting me quite hard and I’ve had significant pain and discomfort.  I suppose it’s as good of a time as any, then, to start thinking about one of the main ways that I plan to take care of myself in 2018: by setting my goals for the year and developing mechanisms for tracking my progress.  I will be writing a post next week about what to expect from this blog in 2018 and a good bit of my content will be somehow related to my goals for the year.

I have 10 main goals for the year, many of which will divided into smaller, measurable tasks.  I will cover 5 goals today and 5 goals on Tuesday.

1. Make progress toward beating cancer.

I think it’s fairly obvious that this is my first priority in 2018.  I was tempted for my goal to simply be “Beat cancer” but I don’t like to set goals that are unrealistic.  Of course, it would be great if my six month course of chemotherapy was 100% guaranteed to cure my cancer, or at least force it into remission.  Given that the cancer has spread, however, I’m trying to be realistic about the fact that I may need further treatment down the road.  Given the side effects I’ve been experiencing recently, I feel like this could also be “Survive chemotherapy.”

2. Write as much as possible.

I am hoping that, within the next two years, I will be able to have a significant career change.  I have several reasons for this.  First, while I have a decent job that is moderately interesting, it isn’t the type of job that’s feasible to stay in for the long term (poor benefits, no pension plan, very high stress).  Second, I believe that the best career move for me at the moment is to transition into a job that is more flexible and, preferably, location neutral.  This means working from home.  I think this is the best for me due to my partner’s career being on a much better path than my own (it would be great to be able to pick up and move wherever he might need to go) and also because my cancer may reoccur or I may develop cancer in another part of my body.  A more flexible career would allow me to continue working during another period of illness.

During my time away from my day job, I plan to write as much as I can about a variety of topics and in numerous different formats, because I believe that writing is my best work from home skill.  I will also be working to develop new skills that I think will be useful to me in pursuing this path, but I’ll talk about that next week.

3. Develop a healthy and relaxing nighttime routine that will allow me to disconnect, focus and rest well.

I am terrible at going to bed for a whole host of reasons, but mostly I just dawdle a lot.  I scroll social media on my phone late at night when no one is posting anything, I watch YouTube videos that aren’t interesting, and I will often sit for 30 minutes just thinking about things.  I plan to shut my devices off earlier and journal every night to focus my thoughts and make sure that I don’t waste time that my body needs for rest.

4. Maintain my low credit card balance and manage my spending according to my reduced income.

2017 wasn’t a great year for me.  My dog died, I was diagnosed with cancer, and physically I just didn’t feel very well.  I also struggled a lot to accomplish the goals I had set for the year and I did a terrible job of managing my free time effectively.  The one aspect where I saw some significant improvement in 2017 is my finances.  I did a lot of research about managing personal finances, paying down debt and saving money.  Unfortunately, I didn’t end the year with much for savings, but I did end the year with way less debt.  I plan to maintain what I started last year and, if I am able to go back to work, start saving a substantial emergency fund.

5. Take care of myself physically.

Physical self care is an important priority for me this coming year — not only because I am in treatment for cancer, but also because I’m bad at it.  When things aren’t going well for me or I’m depressed, I often don’t take good physical care of myself.  I skip brushing my teeth, I don’t apply my psoriasis ointment, I don’t moisturize my skin (which I desperately need to do because I have such sensitive skin) and I stress/binge eat junk food.  I will need to manage all of this a lot better in order to keep myself positive and comfortable.  My doctor has also recommended that I get 150 minutes of physical activity per week, so I’m hoping to stay on track with that as much as I can, though I think it might be a bit of a challenge on the weeks when I am recovering from my treatments.

Stay tuned for Tuesday’s post, where I’ll be discussing the rest of my goals for 2018!  On Sunday I’ll be posting my new Media Round-up.  Watch out for it!

 

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.

 

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.