Me and Burning Out

I’m burning out. After months of propping myself up, telling myself that everything is going to be okay, and a few weeks of struggling with a new puppy, I’m starting to get exhausted in a way that I don’t know how to recover from. This is a dangerous place for me because it’s prime depression ground. I know that after I was first diagnosed with cancer I entered a kind of hyper-vigilant phase. This often happens to me during times of personal or family crisis. I step up, I do what needs to be done and I manage. I take care of whoever needs taking care of, I provide the shoulder to cry on, I neglect myself.

Generally speaking, this kind of behaviour isn’t particularly destructive. Most of us will have to step up and manage personal crises, care for loved ones etc… and there will always be some combination of adrenaline or sense of personal duty to keep us going. The problem is, eventually that runs out — or at least it does for me. In 2013-2014, when I had to act as a caregiver for my mother, I looked after everything. I did all the housework, cooking, driving to and from appointments, grocery shopping and ran all the errands. I also went back to school part time and managed my coursework. It was familiar territory for me in many ways, because I also had to care a great deal for two of my grandparents when I was in my 20s, but it was difficult. It’s never easy to see your parents suffering — it is the definitive indicator of your finally becoming an independent adult. I think, no matter how old we get, we tend to see our parents as people who should be looking after us and not the other way around.

My mother needed surgery and once she began to recover from that, I truly began to fall apart. I fell down into a deep, depressive pit and could not claw my way out: I spent about 18 months playing Final Fantasy XIV (the MMO sickness finally hit me) and taking one easy course in my certificate program at a time. I convinced myself that as long as I could complete the courses, I was totally fine.

I wasn’t totally fine. I was anything but totally fine. I needed help and (probably) medication. While depression is a consistent issue for me, I have had sustained periods where my depression worsens to the point of my not being able to function. Over the years I’ve come to recognize that significant burnout is one of my major triggers. A crisis occurs, I step up and go at it until I run out of steam, and then I fall apart.

So, right now, I’m a little terrified. My dog, Daisy, died on October 20, 2017. Two weeks later, during the first week of November 2017, I was hospitalized. A few weeks later, I was diagnosed with cancer. By the end of 2017, I had had a port installed and started chemotherapy. Despite some fairly minor fear and nervousness, I have stood up and faced these issues head on. I haven’t been on the floor crying, as some expected me to be. I’ve been productive and I’ve made an effort to enjoy myself, despite side effects that limit what I can do with my spare time.

But then we were stupid and we got a puppy. The greatest piece of advice I could ever offer someone right now is that you should not get a puppy when there are things going on in your life that are stressful and potentially life-changing. People will always tell you that puppies are hard, but reading/hearing that and then actually living it are two totally different things. Puppies are much more difficult than anyone will ever tell you and the fatigue from cancer treatment certainly doesn’t make things any easier and any other major stressors in your life won’t help you either.

When we first got Frankie, I went through another short phase of hyper-vigilance. My adrenaline got going and I was able to manage everything again. I trained her when I was able, became much more mobile, and generally felt physically stronger. A few bad days later, however, and I’m starting to feel all that strength leaving me. I just don’t have the energy right now to sustain the kind of consistency that Frankie needs. I’m tired and I’m sick and I get lazy sometimes.

I know that things will get better with Frankie and I know that, eventually, we will bond properly and I will love her more than anything, but I’m scared right now that all of this new stress might push me somewhere that I don’t want to go. I’m going to make an appointment with my social worker as soon as I can so that I can talk with her about how to avoid falling into another dark and awful pit. I’m hoping that talking about it with a professional will help me a great deal. I think also, a little vacation will help. Next week, my boyfriend is coming for a visit and, hopefully, that will be a nice break where I can be a little selfish for a few days and recharge my batteries.


A Disappointing Workshop

Last week I attended a Look Good, Feel Better (LGFB) workshop at the BC Cancer Agency’s Fraser Valley centre (at Surrey Memorial Hospital). During our initial teaching session, the chemotherapy pharmacist at the hospital where I am having treatment mentioned to me that I should check out the LGFB program because she had found that many female patients had found it helpful. Based on a cursory look at the LGFB website, I immediately decided to register for one of their workshops, because it looked to me like it would be a session about self confidence and self care.

Rather than a presentation and discussion about how to look after ourselves physically during cancer treatment, we received a makeup and skincare lesson that just gave all the normal steps for putting on a full face of makeup: cleanse, tone, moisturize, the whole deal. The presenter read from cards that were provided by the LGFB organization and didn’t provide much further information. A few tips were given here and there, but for the most part, it was all just read from a presentation packet. There was a short discussion about wig options and care toward the end, but I would say it was only about 25% of the presentation. The most useful information for me came from other participants who had experience with wearing wigs.

I want it to make it clear that I’m not lashing out at the use of makeup. I think makeup is great and I admire those who are skilled at using it, but it’s never been my thing. I have painfully reactive skin and have to be very careful with what I put on my face. I have psoriasis, rosacea, and keratosis pilaris. I told my dermatologist awhile back that I used coconut oil as my body moisturizer and also that I was trying to go cruelty free with my beauty products and he scowled at me and gave me a list of suggested products that were basically all just Cetaphil and CeraVe. Whenever beauty YouTubers I watch talk about how gentle products are and how great they are at calming their skin, I try them and they literally burn my face. I can’t use any scented products because chances are they will aggravate my psoriasis or give me a huge rash.

Basically, I struggle with my skin. When I try new products, I try them one at a time so that I know which product is causing me to flare up. During the workshop, we were given a donated kit of products (which is huge and probably has about $300 worth of free products in it) and we were expected to do the skincare and makeup steps as the presenter read the LGFB instructions.

When I explained that I wouldn’t be able to use the products due to my skin issues, the presenter seemed quite frustrated. When other members of the group decided to forego a step or two here and there, she also seemed quite frustrated. I’m not sure why the presenter was so prickly about us not following along exactly as she expected but our group seemed to listen actively and attentively. I probably should have mentioned that the neuropathy in my hands has had such a negative effect on my manual dexterity that I couldn’t do a full face of makeup now if I tried, but I was having a rough day with it and didn’t feel comfortable disclosing this to the whole group.

The free products were an extremely kind gesture and I did get a lot of high quality skincare loot for free. Each kit contained the products necessary to do a full four-step skincare routine and a full face of makeup. The products were a good mix of drugstore and department store brands, such as Clinique, Vichy, MAC and Cover Girl. I have tried out a few of the products at home and I’m happy to have some of them, especially since I don’t have any money coming in at the moment. Not having to buy new cleanser and serum for a time will be a huge help to my already tight budget.

I guess the best way to frame my disappointment in the workshop, other than the fact that I thought the presenter was unnecessarily prickly, was that the only solution offered to the shittiness of cancer treatment was makeup. It just felt a little superficial and outdated to me. The presenter often used the phrase “feel like yourself again” but I would argue that women undergoing cancer treatment don’t need to feel like ourselves again, we need to get to know or learn how to cope with our new self. Or really, several new selves: the self of chemotherapy, of radiation and of survivorship. Sure, I might get a wig to help me feel more confident and comfortable in public, but what I really need is some tips on how to deal with looking at myself in the mirror and seeing a bald head.

This could all be a bit much to expect, but I think that LGFB could do a little better. Maybe I was stuck with a presenter that wasn’t great, but I think maybe starting with a knowledgeable discussion about the realities of how cancer changes the way you look over reading basic makeup steps from a booklet might be a better way to go.

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!

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.

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.


Starting over

After several years of not blogging, I have decided that it’s time to start writing on a regular basis again.  On the recommendation of my therapist, I have tried using a paper journal, but while I find writing on paper to be quite satisfying, it can be a little time consuming and I have trouble sticking with it.

And thus I am blogging again and I have some grand plans.  For the past few years I have taken an interest in self-improvement and self-actualization.  I’ve tried out a lot of different things like tarot readings, goal setting, journals, wellness wheels, watching lifestyle videos on Youtube, planning, all to varying levels of success.  I have found wellness wheels to be particularly useful, as they provide me with an overview of which areas of my life need work.

Every year I do two particular wellness wheels, both of which have an interesting crop of categories.  I tend to do well in areas such as fun and leisure, personal growth and learning, romance (because right now I am in a good relationship), spirituality and intellectual health.  None of this is surprising as I generally excel at pushing myself up steep learning curves in my spare time and I have a lot of interesting hobbies that I enjoy.

My lower scores are almost always in the friendship, physical/mental health, career and money categories.  This is also not particularly surprising, as my main career choice has been a huge flop, I have been unemployed for long stretches, I have been diagnosed with several chronic illnesses, I suffer from depression, and I have been in significant debt for the past few years.

I have been making positive changes, particularly with regards to my finances.  I have nearly paid off my credit card (which was maxed out at about $8000), which has carried a balance for about 17 years.  I have also made a responsible budget and, while it is a little complicated, I have confidence that I can stick with it.  When I do my wheels again in January of 2017, I know that this score will improve a great deal.

I am proud of myself, but I feel like there is more that I can be doing to make improvements in other areas of my life that need attention.  I had a significant falling out with an old friend this week and, while I think he was being a tremendous asshole, he made a few points about me that were accurate.  This was a significant wake-up call for me and I spent most of my day yesterday thinking about (and writing down) the main aspects of my life that need the most attention:

  1. I have isolated myself and almost completely withdrawn from all of my friends.
  2. It is likely that I have been in a depressive episode since mid-2014. I have felt better at times, but I suspect that I have never fully snapped out of it.
  3. I have not been managing my chronic medical conditions as well as I could and, due to my depression and various other issues, my emotional binge eating has reached a level that is extremely damaging.
  4. My previous career path is not working and I need to embark on a complete career change.

In order to work through these issues, I am going to do my best to go to counseling once per month.  I am also considering medication to assist me, but I will discuss that with the counselor.  Sometimes I think that counselors think I am doing quite well, because I am good at assessing and analyzing my issues; however, I am not good at dealing with them.

I will also be blogging.  Writing has always been a hobby that I enjoy and I believe that it can help me with a number of the issues that I discussed above.  My plan, for now, is to primarily write about my journey through a CBT (Cognitive Behavioural Therapy) workbook, my feelings around depression and taking medication and how I do with counseling.

And finances, I will probably write about finances.  I purchased an interesting book about finances that has weekly exercises for improving and adding to your knowledge about  money.  I have become a lot more interested in personal finance, and I think it will help to keep me honest and on track with my budget.

Here’s to hoping I stick with it!