So what happens now?

It has been awhile since I’ve given everyone any type of real update, and since that was the initial point of this blog, I figure I should probably do that. You might be thinking, she’s done the scary part of chemo, we’ll never hear from her again! But don’t you fear, there is much more to share and the journey continues, one day at a time.

In terms of my surgery recovery, it has gone quite well. I always feel pretty satisfied when the doctors examine me and say that everything looks great, as if I had anything to do with it. I still suffer from body pains, mostly in my legs, which is assumed to be a residual effect from chemo. I worry that the pain will always be there. The price paid for living? Maybe.

I’ve been going for long walks, pushing through the aches, and I feel a bit stronger each day. I’ve also gotten pretty good at knowing my limits and being very blunt when I realize I need to go home and rest. After spending so much time alone, cooped up inside all winter, it can be a bit exhausting and overwhelming to be in social situations for long periods of time. That being said, I have loved spending some quality time with my friends the past couple weeks, catching up on their lives, and talking about non-cancery things. I have such good friends. I am lucky.

Hair update: There is not much to report on that front. I look like a newborn baby. Or a balding old man. Take your pick. There definitely has been some growth, but it’s very thin and sparse, and my scalp is still very much visible. I have read that the drug infusions I still receive can slow the hair growth process. As someone who used to cry because my hair was too thick, I now find myself using fancy volumizing shampoo that promises plump looking strands. The irony is not lost on me.

So, next steps. I have been hesitant to start really thinking or talking about the next phase of cancerland, because I really just want it to be over at this point. Now that I am feeling better and feel a bit of my “old self” creeping back in, I want to just ignore all the cancer stuff, erase it from my memory, pretend it never happened. I want to move on and get my life back. But my road is a long one, and it ain’t over till the fat lady sings. (Someone better hire a fat lady to sing to me when it’s actually over.)

In a few weeks, I will begin my radiation treatment. Many months ago, when I was writing about my frustration over having to make impossible decisions, this was one of them. To radiate, or not to radiate. That was the question. And I decided, since I’m having so much fun with this cancer stuff, why not throw that into the mix as well. Just kidding. The thought process was not nearly that simple, though I wish it was. The situation is incredibly complicated and I’m not going to describe all the particulars, for fear of unleashing the anxiety I am trying to squash surrounding the subject. The bottom line is, radiation is on the horizon.

Side effects may include the following: Skin burn. Blistering. Redness. Fatigue. Cosmetic defects. Superpowers.

These folks look so happy. Radiation must be a riot!
These folks look so happy. Radiation must be a riot!

This week, I will be undergoing my simulation where they will map out my treatment zone. This will involve getting several small, permanent tattoos on my chest. Never thought breast cancer would be the reason I would get a tattoo. But there you have it.

I also will soon be starting my hormone therapy, since my cancer is fueled by certain hormones. This will be in the form of a pill, which will be quite a nice change from the way I’ve become accustomed to receiving my drugs. There are all sorts of unpleasant side effects possible from this little pill. The list is long. The most common ones are: Hot flashes. Weight gain. Hair thinning. So I will be a fat, menopausal, bald man. It’s just all so glamorous, I can hardly stand it.

So, that’s essentially where I’m at. Mentally, I am in a bit of a strange place. I am feeling happy, and hopeful, and enjoying every second of my life, with a deep appreciation for every minute that I am allowed to feel good. Every step I can take, every hour that I’m not ill in bed, feels like some sort of small miracle. Yet it is during these happy moments that I am also filled with anxiety and fear. The fear of not knowing how long it will last, or what the future holds. Or what it doesn’t hold. The fear of my lifetime of happy moments being much shorter than everyone else’s lifetime of happy moments. I feel this need to hang on to every second. To pause time. To soak up everything and everyone, for fear it will all be taken away from me.

This is what it is to have had cancer. To have danced with death. To have lived through hell. This is what I’m stuck with now. The good, and the bad. So what do I do? I go on.

Life goes on.

Playing with my nephew. Happy moments.
Playing with my nephew. Happy moments.

Sunny days

This past winter was a particularly miserable one for the city of Toronto, where I live. Cold, windy, grey, and what appeared to be never-ending. I often felt as though the weather outside was mimicking my own misery and sickness. That spring would come as I started to emerge from the darkness. I realize it sounds very narcissistic, to believe that I somehow can control the weather. But sure enough, this past week as I started to heal from my latest surgery and as my mood began to lift, the sun came out, the tree buds bloomed, and everyone seemed to let out a collective sigh of relief. We made it through the worst.

I made it through the worst.

I’ve been having quite a lot of, dare I say, fun the past few days. Friday I had my treatment, which ran just about as smoothly as that kind of thing can. Service in the chemo ward was top-notch, and I received multiple offers of pillows and apple juice. It was also fairly quiet, and no one around me appeared to be dying, which is always a nice bonus. Afterward, my mom and I met my sister and we got some frozen yogurt and went to the park and popped into a few boutiques. Then in the evening, the hubs and I went for a delicious dinner, where we sat on a patio, and relished the moment.  By the end of the day, I don’t think I even remembered that I had just had drugs injected into a vein near my neck a few hours earlier. Score.

Yesterday, I continued on my quest to be a normal young person in the city. After having a nice visit with my aunt, uncle, and little cousin (I am devouring my aunt’s butterscotch banana bread right now!) I had a nice walk through my neighbourhood and around the park and surrounding area. My feet ached from wearing terrible sandals. A regular person kind of ache. Not a chemo ache. There is a very, very big difference, and I was glad for it. Then at night, we went to see Iron Man 3.

Yesterday, getting ready for my date with Robert Downey (and my husband).
Yesterday, getting ready for my date with Robert Downey (and my husband).

I don’t know how to properly convey how excited I was to do something as simple as see a big blockbuster movie on its opening weekend. It has been a long time since I was able to do something like that. To be able to say I feel like doing this thing that many other people will be doing at the same time and then actually do it. It was amazing. Climbing the stairs up the large theatre was a bit of a challenge, but that was the only time I felt limited. I wore my wig, and from what I can tell, blended right in with the masses. Just another 20-something out on date night, watching a movie, wearing ridiculous 3D glasses. I enjoyed every second of it. I thought about how far special effects have come, and how watching a movie is one of my greatest simple pleasures. And I did not think about cancer. Explosions, and fast cars, and Gwyneth Paltrow’s abs. But not cancer.

Things are still difficult for me. My muscle and joint pain makes me feel as though I am a brittle old lady. When I sit down on the ground, it takes some serious problem solving to get myself back up. I am waking up each day, waiting for it to subside, but so far the pain is sticking around. I am also still wrestling with the emotional trauma from everything I have experienced. Sometimes it is these very moments, when I’m feeling happy and alive, that the fear creeps in. What if this doesn’t last too long? What if this is just a tease? What if I have a limited amount of happy, good days left, and then it all goes to shit? It is so hard to push these thoughts aside and it’s something I will have to work on. I don’t expect to have it all figured out anytime soon. But I’m trying.

I have my next phase of treatment approaching. I will go into more detail as it gets closer, but for now I don’t want to think about it for any longer than it takes me to type this sentence. I want to be young, and I want to play in the sun. So I’m going to go do that.

See ya.

Ringing the bell

I’m happy that I made so many of you happy with my last post. Tomorrow is chemo #6, so since I will probably start depressing the hell out of you by this time next week, I figured I would check in again while the going is mostly good.

I am currently chomping on some crackers to take with my pre-chemo dose of steroids. I will be on a lower dose this round, which hopefully will minimize some psychotic feelings and fat face and other issues, while still doing its job of mitigating serious reactions to the chemotherapy. I have learned that most of cancer treatment is trying to find a middle ground between making sure your treatment is doing its job and making sure you aren’t completely miserable and in constant agony. That sweet spot is a very difficult one to find, indeed.

I am still feeling pretty decent, all things considered. I have developed some uncomfortable muscle pain the past couple days, which I imagine is a delayed reaction to the cumulative chemo sessions. I also have constant runny eyes which can make it difficult to see, and a constant drippy nose, which can make it difficult not to be gross. Some side effects can show up after completing chemo (something fun to look forward to!) and last for quite awhile. It is difficult to deal with the toll all of this has taken on my body. A lot of people don’t realize the severe effects cancer treatment has on your physical well-being, long after the treatment is over. I worry sometimes about long-term muscle pain, joint pain, exhaustion, fogginess. I worry that people won’t understand and will expect me just to be like any other normal young gal. But I will never be normal. Nothing about this is normal. I guess I will just have to deal with it, same as I have been with everything else. And hope that I will find nice people to carry me up a flight of stairs when my legs start to ache as they do now.

So tomorrow is my final chemo. I made it through to the end of this grueling part of my aggressive treatment plan. At my hospital, when one finishes their chemo treatments, there is a bell you’re supposed to ring and people clap and whatnot. I’ve been a bit torn about ringing the bell. In three weeks, I will be right back in the chemo chair, because I need to continue to receive targeted antibody drugs for an entire year, due to my badass type of cancer. There are still side effects, but they should not be nearly as severe. I have already started on those drugs, but since they’re currently mixed in with my chemo cocktail, it’s difficult to know which side effect is a result of which drug. Hopefully, it will be a breeze compared to what I’ve been dealing with. But the fact that I will still be hooked up to bags of drugs every three weeks for a year makes me feel a bit reluctant to ring the bell.

However, after some deliberation, I have decided I am going to ring that goddamn bell. I have had to sit in that chair many times, with cytotoxic liquid dripping into my veins, hearing the bell ring and feeling envious of the person ringing it. That lucky bastard. So, now it’s my turn. I’ve earned it. And around this time next year, I will ring it again. Harder. In all likelihood, I will probably break it. Poor bell. You have no idea what’s coming your way.

Needing this pep talk to get me through tomorrow. Thanks, Coach Taylor. I can always count on you.