To life, to life, l’chaim

Last week, I attended shiva for Linda and had the honour of meeting some of her amazing family. It was so special to get a stronger sense of what Linda’s life was like, and the people she surrounded herself with. I felt so lucky to have had her come into my life, even though it was for much too short a time. I do believe that people enter our lives for a reason, and I feel that Linda left such a wonderful legacy behind, and taught me many lessons, for which I am very grateful. Her family told me of how much Linda had admired my attitude and my honesty, but I hope they know that the feeling was completely mutual, and I felt a true kindred spirit in Linda.

Of course, despite it truly being a celebration of her life, I still felt a deep sadness, as I’m sure most did. It is always so sad when someone dies much too early. This unshakable feeling of a life unfinished. Cut short. Sometimes I wonder if anyone ever feels ready to go, when it’s their “time”. Is it easier when you’re 90 vs. 30? Or does it always feel as if life just sped right by you, without there ever being enough time to do and see all that you planned.

Since getting diagnosed with cancer, I’ve thought to myself if I could live just until “middle age”, that would be enough and I’d be satisfied and grateful for the extra years I got. But I’m certain if I make it to that point (and I hope I do), that I won’t feel any more ready to go. That it won’t be any easier. When life is good, it is natural to get greedy and want more. More years, more experiences, more trips, more love, more laughter. More living.

I do feel more pressure to live my life to the fullest and make every day count and fulfill the requirements of countless cliches. I think it would be almost impossible not to feel this way, when you know your days could be limited and that a long life and old age is not a certainty, but more of an abstract concept. A hopeful wish. A perhaps, rather than a definitely.

The strange thing is, even with this pressure and this fear safely tucked in the back of my mind, I don’t really want to do anything different. I don’t want to jump out of a plane, or climb the tallest mountain or run away to an exotic part of the world and leave my life behind. If my life were a movie, I feel like that’s what my character would do.

But what I want most of all, what I dream of, is a normal, long life. Filled with the mundane, with splashes and sprinkles of excitement thrown in here and there for good measure. I want family, and traditions, and changing seasons. Lazy nights and long days. Eventually, wrinkles, and some grey hairs (or any hair, really).

When it comes down to it, I just want my life to go on. I don’t need anything to change, and I don’t want to be a poster girl for how cancer can miraculously change your life for the better. I just want to be able to feel that when my time is up, I’ll know I lived the life I was meant to.  Nothing particularly extraordinary. Nothing filled with daring adventures and endless excitement.  Just life. Boring, typical, beautiful life.

Steph’s cancer tips – Part I

I have always been hesitant to offer any advice to those dealing with cancer, as everyone’s experience is so individual and unique. But I do feel as though I have gained a heavy load of cancer wisdom and it might be my duty to share this with others. I often turned to the internet and stories of cancer survivors to help me navigate my treatment and everything that came before and after. So I do feel it’s important to dispense what knowledge I might have, with the chance it could help someone.

The Canadian Cancer Society reports that about 2 in 5 Canadians will develop cancer in their lifetimes. That is an unsettling statistic, no doubt. And if you employ some basic logic, this means that you or someone close to you is likely to experience cancer at some point (sorry, I don’t make the rules). So here are some tips, in case you ever need them (and I hope you don’t):

Telling people you have cancer

This one is a toughie and one of the first real challenges you face after a cancer diagnosis. Suddenly it is not just about you, but it is about everyone else’s reactions to what you are going through. For me, it was important to have control over this aspect. I sent emails to my closest friends, so that they would hear it directly from me and there would be no false information. I also gave direct orders: Don’t freak out. Don’t ask me questions right now. Don’t call me because I’m not ready to talk about it. And they followed my instructions, each responding with their concern and love, but none asking questions or showing panic.

Telling people in person can be more difficult, as you have to watch their immediate reactions, and a role reversal immediately takes place, where you feel as though you need to console them and tell them everything will be okay. This can be a bit uncomfortable, which is why I tried avoiding telling people in person as much as possible. I hated watching people’s jaws drop. I hated all the questions that naturally followed. I hated seeing their fear that I would die written all across their face.

This is how people react when you tell them you have cancer.

This is how people react when you tell them you have cancer.

This was one of the reasons I chose to start a blog and be public about my cancer. To know that it was out there and that it wouldn’t come as a shock to every person I happened to bump into on the street. In this sense, the blog has been a tremendous help to me. It has given me a sense of control over who knows about me and what they know.

So really, it is up to you how you choose to inform people about a cancer diagnosis. If you want to keep it to yourself, or you want to send out an email blast, or you want to ask a family member to do it for you. It’s about you and what you need, in that moment. It’s not about other people and how they might feel. This will be your first lesson in how to be a selfish cancer patient. But don’t worry, you’ll find you’ll get pretty good at it.

Attending doctor’s appointments 

I am a pretty organized person, which often makes me wonder how the average patient deals with so many appointments and keeps track of so much information. When I first started with my cancer meetings, it was extremely overwhelming and felt endless. There were many specialists to meet and a ton of info was given in a condensed amount of time.

It is important to have some sort of system. For me, my iPad has been my savior and I love it dearly. (It has also become a running joke with my oncologist, who makes fun of its cracked and abused condition every time I see him, after I accidentally smashed it while waiting for my chemo one day.) Before each appointment, I organize all my questions via note-taking software, which I can easily access from the web, my iPad, or my desktop. I constantly add to my notes as thoughts pop up between appointments. When you are in an actual appointment, your time is short and your thoughts get muddled. This is why it is good to come prepared.

During my appointments, I go through all my questions. I also record the audio of these meetings, which is way easier than trying to frantically scribble every little thing your doctor says to you, which we attempted to do in those early appointments. These audio recordings have been lifesavers to me. They’ve helped me go back and listen very carefully to the opinions and advice of my healthcare team, which often helps me get a better grasp on my particular situation and the decisions I need to make. They also help me to face the awkward things I say and bad jokes I make while meeting with doctors.

Quick tip: Be careful not to delete the recording before it saves. I have done this. Do not recommend.

Dealing with unsolicited advice

Anyone who has had cancer has likely dealt with someone telling them what they should be doing to fight their disease. Many of these people have good intentions, and sincerely believe they are actually providing you with helpful information. Many may not realize that how you choose to treat (or not treat) your cancer is completely between you and your healthcare team. Maybe your partner, or your parents. Otherwise, no one else’s opinion really matters. But unfortunately, you will still get it. Again, and again. And again.

I think many people do not realize that offering unsolicited advice can actually cause more stress than good. It can make you wonder if you are following the right plan, or question your faith in your doctors and medicine. It can fill you with doubt and cause anxiety, as you wonder if it’s true that eating a cookie is going to make your cancer spread, or that modern medicine is just some big evil scam and you should just eat a pound of broccoli and you’ll be just fine.

For me, I had to learn to shut out the noise. To understand that although people had good intentions, their beliefs were not my own. To put my trust into my extremely accomplished and brilliant physicians, and to believe research and hard numbers, not speculation. Ultimately, you know what is best for you. No one else does. And I think this applies to many facets of life, not just to those with cancer.

Sometimes, we all just need to shut up, and let people do as they wish.

TO BE CONTINUED…

Linda Lewis

Today I received some very sad news of the passing of a friend, Linda Lewis, who was diagnosed last year with acute myeloid leukemia. Linda was an amazing and accomplished woman, and you can read a bit about her in this article.

I was first “introduced” to Linda via her twin sister, Leora, who left a comment on one of my first blogs saying I might want to follow Linda on Twitter. I did, immediately, and quickly learned that Linda and I shared a very similar, somewhat dark sense of humour, and we both used it as a way of dealing with the crazy hands we had been dealt. We spent months tweeting each other back and forth, and she was hugely supportive of my blog and my writing, often sharing it with her followers.

Linda Lewis ‏@LindaOnLeukemia30 Mar

@steph_rebecca Thank you for sharing the hard truth. Thinking of you.

Linda Lewis ‏@LindaOnLeukemia8 Feb

@steph_rebecca If anyone is entitled to be an “emo wuss” you are. Thanks for your candour. See you around the Princess Margaritz someday

Linda Lewis ‏@LindaOnLeukemia22 Jan

@steph_rebecca you deserve to be grumpy! fyi, my nickname was also Brainer, but it was better than my other one in grade 8: the Prairies

Linda Lewis ‏@LindaOnLeukemia10 Jan

Worth reading: “@steph_rebecca: Cancer is a gift I’d like to return. New blog post: http://wp.me/p2VkE2-1N 

Linda Lewis ‏@LindaOnLeukemia26 Dec

@steph_rebecca: I shaved my head. http://wp.me/p2VkE2-1v ” Thank you for inspiring me to post a photo of me, the real me, as I look today

Recently, I planned to meet up with Linda at the hospital as I was finally starting to regain my strength. But it was at that time that her situation worsened, and we were not able to have our meeting.

I have thought about her every day, often checking her Twitter page for updates, as I realized I had grown quite dependent on hearing from her. Yesterday I emailed her sister to let her know I was thinking about Linda all the time and hoping she was okay. Leora emailed me this afternoon to let me know Linda had passed last night, in her home.

I can’t really express how I feel. To lose a friend I never got the chance to meet. To have my first real “cancer friend” loss. But I don’t even really want to try to express my feelings, because it isn’t about me. It’s about her family. Her children. Her sister. As someone who has a sister who doubles as a best friend, I can only imagine how hard that loss must be.

I hate cancer. I hate it so much.

Rest in peace, Linda. I promise to give cancer the big “EFF YOU” in your memory.

The waiting game

There hasn’t been too much to report lately. I feel as though I am in a strange state of limbo. But not the fun kind of limbo, like these people are experiencing:

The fun limbo. Although not really that fun if you're terribly uncoordinated like I am.

The fun limbo. Although not really that fun if you’re terribly uncoordinated like I am.

Rather, I am in a sort of cancer limbo. Somewhere in between being sick and being healthy. In between the chaos and instability of the past year, and what I hope to be the more calm and predictable pace of the next phase. I feel as though I am just waiting. Waiting to be approved to return to work. Waiting to have my 3-month check-up with my oncologist. Waiting for my hair to grow back. Waiting for all the plans I have to become a reality. Waiting for my life to resume.

And of course, waiting to see if the treatment worked, and to know that I didn’t go through hell for nothing. Unfortunately, I’ll be stuck in limbo waiting for that particular answer for quite awhile. So I guess I need to adapt and adjust accordingly. Which, luckily, I’ve gotten pretty good at.

I am also waiting to see if these terrible hot flashes will subside. I got about a two week break between chemo-induced hot flashes and hormone-induced hot flashes. Turns out, they are pretty similar. I even take a mild anti-depressant to try to combat them, but it seems to be failing me. Just another pill to pop.

I’m sure there are many menopausal ladies out there that can relate to the horrific discomfort that is the HOT FLASH. I wake up multiple times throughout the night, feeling like my face is on fire, with my body covered in sweat. Then I lie awake, remember oh, right, I had cancer. This sucks. And I wait for it to pass until I can finally go back under the blanket, and wait for the next one to hit.

This isn’t an uncommon thing for a woman to experience. I get that. But I am not supposed to be experiencing this for another 25 years. I try to flip my thinking and remind myself, I’m doing this to prevent a recurrence of cancer. I’m doing this to increase the odds I won’t die. And when I think of it that way, it doesn’t seem so bad. A small price to pay, really. But when I feel as though I’m on fire, I’m not thinking about the benefits of cancer treatment. I’m thinking about how shitty it is to have cancer in the first place. How frustrated I feel that I will be dealing with side effects for a long, long time.

Last week, I went to a Justin Timberlake/Jay-Z concert in a big stadium. I don’t typically go to shows like this. I prefer more intimate performances, and less of a spectacle. But I thought it would be a fun time, and it really was. It was good for me and my husband to be out, on a weeknight, doing the kind of thing your average young couple in the city might do.

There was a moment when I looked around at the other people in the crowd who surrounded me. My peers. People my age. Girls with their long hair, and their breasts sitting right where they should be. And I thought to myself, I have been through so much more than any of you. You all have no idea.

When the concert began, I felt my emotions take hold and my eyes even got a bit misty. It still feels surreal, to be out, in public, enjoying myself. I have experienced so much misery in such a condensed period of time, that the happy moments catch me off guard. Those moments where I feel like my life has returned, like it was all a bad dream.

And then, I was hit with a hot flash. My face felt as though it would melt right off onto the dirty floor, and flow through the aisles, mixed with all the spilled beers that had been kicked by overzealous concertgoers. I thought I might pass out and topple over my chair, while everyone around me continued to dance and sing along, oblivious to my scorching body temperature. I remembered the cancer. And that I’m not like those other people. And that I’m not back to my normal life. Not just yet.

And so, I wait.

My friend drew this for me when I was doing chemo. It is super hostile and I love it.

My friend drew this for me when I was doing chemo. It is super hostile and I love it.

Life after cancer

First, a big shout-out to everyone who has donated to me for the Weekend walk. I was again blown away by how much support I have, especially from people who have never met me who somehow found this blog and felt compelled to reach into their pockets. There have been so many nice messages sent to me via the donation page, and so many “likes” on my Facebook updates/photos from the past couple days, and so many texts and emails and cards and gifts. When I think about all of it, I get a little misty eyed and feel like I am wrapped up in a warm, fuzzy blanket of kindness and empathy. I am so touched by the generosity others have shown me. I hope I can pay it forward somehow, someday.

Yesterday marked another significant milestone of my adventures with cancer: I finished my 25 rounds of radiation. It was a great day. I got to piggyback on my radiation therapist’s birthday party and steal some treats from her to celebrate my last treatment. I said goodbye to my favourite receptionists who greet me with smiles every day and whose faces I will actually miss seeing. I had lunch with a new friend who gave me a very thoughtful and sentimental gift and tears and hugs were shared. I saw a movie with my mom and sister, and went out for a nice dinner with my family, where I received some beautiful flowers. It felt like my birthday, except about a million times better.

And now I am exhausted. And feel as though I could sleep for about a week. Turns out, radiation is pretty tiring, just like the warnings said. It took awhile to catch up with me, but it happened. As did the burn. And the itching. But all of that should go away with some time. So now I sit. And I wait. And I watch a lot of TV. Not such a bad deal, honestly.

I am getting many questions from many people, which leads me to believe most of you are once again confused as to what happens now. And I don’t blame you, because it is confusing. For me, this is my every day existence – managing my cancer schedule/life. But for others, I know it is a lot to wrap your head around, since there are many things in your life that have nothing to do with cancer. Oh how I envy you.

I am still in active cancer treatment. Still fighting this evil thing that is trying to ruin all my fun. I will still be receiving my IV cancer drugs every three weeks, until January, which means I am not yet saying bye-bye to the chemo ward and nurses. And I also am taking my hormone therapy drugs in the form of a pill, each and every night, which cause me to wake up throughout the night drenched in sweat. But compared to everything else, it’s all doable. Not ideal. Not a party. But bearable. And that’s okay with me.

In some ways, I am glad to still have these things going on. Like I am being slowly weaned off of cancer and the constant attacking of cancer cells. It helps me, in a way, to feel like I am doing something, like I am actively attempting to keep this cancer bullshit far, far away from me.

It is well documented that for many cancer patients, the most psychologically trying aspect of treatment is actually after it has ended. You are suddenly thrust back into the world, away from the constant monitoring and care of your healthcare team.

Hey, you have cancer. Now we’re going to make you crazy sick and unhealthy for awhile. Now you’re done, and it might come back, but it might not. Ok, so long, see ya!

It’s a difficult thing to wrap your mind around. And it’s something, I have come to realize, that most people who haven’t had cancer are completely unaware of. The post-traumatic stress that can be triggered after battling a life threatening disease. The anxiety that comes with not knowing if you killed it, if it’s still there, or if it will be come back. The uncertainty of it all, and the feeling that no one has been through what you have, and no one could understand. People just expect that since you’re healthy again and look fairly decent, you’re back to normal. You’re fine. You can move on. But it isn’t that simple. In fact, it’s extremely complicated.

The “Life After Breast Cancer” book I received at the hospital yesterday. If only it were as simple as reading a book.

Oddly enough, there was an article published today in the NY Times about the anxiety that creeps in post-cancer.

Dr. Laura B. Dunn, a professor of psychiatry and director of psycho-oncology at the University of California, San Francisco, said that although cancer is increasingly labeled a chronic illness, “it’s different from arthritis in that it’s more of a chronic threat. Some of us are wired to be attuned to threat.” The anxiety is understandable, she said, because “no one can guarantee you a cancer-free survival.”

Although I would love to shout from the rooftops “I’m cancer freeeee!”, no doctor or test can really tell me that, because that’s just not how it works, as much as everyone really wants me to say that. I can believe it, and I can hope for it, and I can keep doing things to try to ensure it. But I can’t know. I have to just have faith. Which is a bit tricky. But I am trying, to the best of my ability.

So that is where we are right now. Surgeries done. Chemo done. Radiation done. Fighting cancer incomplete. Moving on from cancer incomplete. I am still very much a work in progress. As we all are, really.

But with all the question marks and uncertainties, one thing I do know for sure: It has been a very long year. And I deserve a nap.

Like me? Hate cancer? Read on.

Thanks everyone for all of your excitement over my last post. Indeed, it was happy news and I was glad to share it with all of you. In other happy news, I have just begun my final week of radiation. Now that my burn is progressing and getting more uncomfortable, I am very eager to say farewell to radiation and my daily hospital routine. The next few weeks will be my “recovery” period, which I’m very much looking forward to, since I haven’t really had one of those since all of this began. I am feeling quite exhausted (which has been exacerbated by not having a functional A/C unit during an unfortunate heat wave), so it will be nice to have some time to relax and enjoy, without the familiar looming of a new phase of treatment quickly approaching.

One thing I am looking forward to is the Weekend to End Women’s Cancers 60KM walk in September. This walk benefits research, clinical improvements, and survivorship initiatives at the Princess Margaret Cancer Centre, which is where I have been receiving my treatment and care. The folks at Princess Margaret do amazing things with the money raised from this walk. As someone who has personally benefited from these amazing things, it is important for me to try to give back.

There are many things that are needed to facilitate cancer research initiatives, but the main thing that’s needed? Money. Lots of money. And maybe you have some money. And maybe you’re angry that young women like me are getting breast cancer. Or maybe you’re angry that 1 in 8 women will get breast cancer in their lifetime, meaning you will likely be closely connected to someone who has to deal with this craptastic disease. Maybe you want to play some small part in fighting back and making a difference. Maybe you want to pat yourself on the back, knowing you could be helping to improve or even save the lives of your friends, your sisters, your daughters. Me. You.

Did my guilt trip work there? Excellent. Now it’s time to pay up.

Everyone who participates in the 2-day walk has to raise a minimum of $2000. Obviously I’d like to raise even more than that. I’d like to raise a million. A trillion. A centillion. But we’ll start small. For now.

If you’d like to donate, you can do so on my personal page by clicking this link. Click the “donate online now” button, and follow the instructions. Anything you can give, big or small, is very appreciated. (But obviously bigger is better. Always better.)

(You can also check out my husband’s page and if you are his friend or family member, or a simple admirer, please donate to his page as he needs to raise the funds as well.)

Usually I really don’t like asking people for money. It makes me a bit uncomfortable. But this year, I have no problem with it. We can all play a small part in fighting cancer. I tried fighting it by torturing my body for the good part of a year. You can try fighting it by throwing a bit of cash at the problem.

If you ask me, I’d say you got the better deal.

The beginning of the Weekend walk last year. Waiting to hear my cancer diagnosis, but still managing to smile for the camera.

The beginning of the Weekend walk last year. One of the last photos taken of me pre-cancer diagnosis.

Life lessons: a case of scanxiety

Back in November, before starting my chemo, I had some scans to get a better idea of what was going on in other parts of my body. The hope being, of course, that nothing was going on. Just regular healthy human stuff.

Everything appeared to be okay, except a few small spots lit up on my lungs. Many strange things can take place in the average human body, but when you have cancer, everything gets extra attention and is slightly more suspicious. We weren’t sure what these “nodules” were and it is not such a simple task to just remove them, when you’re dealing with an area like the lungs. So the plan was to leave them, do chemo, wait a few months until the chemo had left my body, and do a re-scan to see if there had been any change in size or quantity.

I was not happy that these spots showed up. But I quickly fell into my chemo/cancer routine and was so overwhelmed with everything and feeling so terrible, that my lungs moved to the back of my mind (not literally… obviously that is impossible. I think.). Then chemo came and went, radiation began, and I saw that my dreaded follow-up scan appeared in my hospital schedule.

There is something cancer patients refer to as scanxiety, which, I’m sure you can guess, is having anxiety about upcoming scans and results. Over the past several weeks, I have been suffering from a major case of scanxiety. I have gone through all the scenarios in my head. I have imagined getting the results, hearing my cancer has spread, hearing I have 1-2 years left to live if I’m lucky. I’ve imagined being thrown back into chemo and never feeling good again for the remainder of whatever time I have left. I thought about how I would tell everyone, and how I would be destroying the happiness of so many loved ones in my life.

Because of this scanxiety, I’ve felt like my life has been on hold, mentally. I have tried to stop myself from getting excited about any future plans on the horizon. I have been unwilling to let anyone plan any kind of party or celebration for me, as I feared that soon enough, I would be mourning and not celebrating. I have tried to take an interest in everything going on around me and everyone’s daily lives and problems, when inside, I have constantly been panicked that I am getting closer and closer to the date when I’m going to be told my life, as I know it, is over.

So there’s been a lot going on inside this ol’ head of mine. And I told almost no one about my lungs or the scan, because I didn’t really want to face what it could mean, and I didn’t want everyone worrying along with me. Trust me, I do enough of that all on my own.

Yesterday, the day at last arrived and I had my CT scan, in the early hours of the morning. Afterwards, I wondered if this would be the last “good” day I’d have. The last day of my former cancer life. I thought maybe I should do something special, in case it was. But I didn’t. I just carried on with my normal life and normal day. I got groceries. I watched some TV. I went to bed. I said a prayer to whoever might be listening. Please don’t let me die. Not just yet. Thanks.

Today after completing my Herceptin infusion and radiation treatment, I went home. A couple hours later, I received a phone call from my oncologist, who knew I was anxious about my CT scan.

The areas on your lung look exactly the same as the first scan. Nothing has changed. If they were cancer, I believe the chemo would have made them disappear. They are exactly the same. Most likely something that has been there since your childhood. I’m happy to draw the line here and never scan it again and be done with it.

So there you have it. No cancer in my lungs. At least not right now. I am not going to die. At least not today.

After I hung up the phone, I started dancing and jumping around. Then I fell into my chair and burst into tears, everything that I had been trying to bury deep down inside suddenly pouring out of me.

It is hard to describe how I’m feeling right now. You really can’t understand until you’ve walked the walk of cancer and scans and all that jazz. Living life every day, thinking you’re about to be told your illness has become incurable… that is some pretty crazy stuff for a young woman to have to think about. For anyone, I suppose. I feel like the heaviest weight imagineable has been lifted off my shoulders. I feel as though I could just float away, in a sea of relief.

For the first time since I was diagnosed, I am choosing to believe it. That my life could be good again. That I could have years ahead of me. I don’t believe this is a definite. I’m not at that point yet, and don’t know if I ever will be. But I believe it is a possiblity, and that is enough for me right now. The possibility of life. How exciting.

In one month, I will be on a beach in Jamaica with my husband. We booked the trip last year, and then had to cancel after my diagnosis, a couple months before we were scheduled to go. We re-booked it as a post-radiation/post-chemo trip, in hopes that I would be okay at that point. That we could celebrate and take a much needed and much deserved break from the daily realities we have been facing for almost a year. And now it looks as though it is actually going to happen this time. In one month, I will be okay, and I will be alive. I am going to go to Jamaica and I am going to swim in the Carribean sea and I am going to be grateful for every single second that I am there.

I truly believe that no one on Earth is happier than I am right now at this moment. No one.

And all it took was a bit of cancer. Fancy that.

I will be doing this again soon. Except with a lot less hair, some weird boobs, and a chest burn. But otherwise - the same.

I will be doing this again soon. Except with a lot less hair, some weird boobs, and a chest burn. But otherwise – the same.