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.


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.


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.

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.

Chemotherapy side effects and invisible disability

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

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

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

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

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

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

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

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

Cancer Update: Prognosis Improved!

Yesterday I finally received some good news!

I received the results of my bone marrow biopsy and it looks like the cancer has not spread to my bone marrow.  This is incredibly good news as it reduces me down to Stage III from Stage IV.  At first, the doctor (a locum, because my regular oncologist is away on vacation) told me that I am still Stage IV, but we read through the staging criteria for Hodgkin’s Lymphoma together and, so long as the cancer hasn’t spread to another system of my body, I am actually at Stage III.

This means so much for my prognosis.  Base 5-year survival rates for Hodgkin’s Lymphoma are 65% at Stage IV and 80% at Stage III which, in my opinion, is a huge difference.  If you add in the fact that I wasn’t having any symptoms of Lymphoma (drenching night sweats, unexplained fever or weight loss) prior to my diagnosis, this means that my chances of making it through this ordeal are quite good.

When I heard the doctor mention that the cancer may have spread to my bone marrow, I instantly lost a great deal of hope and morale.  She also discussed the fact that, if the chemotherapy wasn’t effective in eradicating the cancer, there were other options.  I have been dreading those other options.  I have been dreading the fact that I might need further treatment after chemotherapy.  While I know that it is still highly possible that I will need further treatment after chemotherapy is completed, I feel like I can at least be a little more optimistic about the fact that the chemo alone might be enough.  I can’t express in words how much that means to me and the positive effect that it has had on my morale. I spent a few hours this afternoon crying.  I was completely overcome with emotion.

Today I’m going for my second chemotherapy infusion (I should actually be on my way home by the time this post goes up).  Of course I’m dreading it, but I’m happy that I will, at least, be going in with a little more hope than I did last time.

I will probably be pretty quiet for a few days, but I’ve written and scheduled my next three posts, so please watch out for them.


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.