Another part of the story

Besides a minor mention here and there, I have never really written about fertility and cancer — specifically, my fertility and my cancer. I’ve had numerous reasons why I didn’t want to write about it: feeling that it was too personal and private, something only to be discussed by me and my husband, or worrying about friends who are moms or soon-to-be-moms feeling they can’t talk about anything baby-related in front of me. But I’ve come to realize that by not writing about it, it sometimes puts me in uncomfortable or awkward situations, which other people likely aren’t even aware of. And why should they be? I don’t talk about it, so their ignorance is really my own doing. I also know that a lot of people read my blog as a way to educate themselves about how it feels to have cancer, especially as a young person, and by not broaching the very important issue of cancer and fertility, I’m not doing a really great job as cancer teacher.

So, here we are. And I am ready to talk about it. Or at least, some of it.

When I was first diagnosed with breast cancer at the age of 28, one of the first things my doctor told me was that she wanted me to see a fertility specialist immediately, since certain cancer treatments can have a negative effect on one’s fertility. This is one of the very major issues facing young adult cancer patients, and unfortunately, it is often overlooked. I have heard countless stories of young men and women who were thrust into cancer treatment, without their fertility being discussed. This is a huge problem, and one I think all young people and all doctors should be aware of. So in that regard, I was very fortunate that both my family doctor and oncologist had discussions with me about how my treatment might impact the potential for me to have children.

Learning that my ability to have children might be compromised on the same day as learning that I had cancer was a major double whammy. It was a tough pill to swallow, when I was already considering the possibility that I might not even live long enough to start a family in the first place. Most people who get cancer are quite a bit older, and don’t have to deal with such things. But unfortunately for me, and for my husband, we had to deal with it, and fast.

The same week that I was meeting with breast surgeons, trying to decide if I should remove one breast or two, I was also meeting with a fertility specialist to discuss my options. To say I was a bit overwhelmed would be a wild understatement. I had tons of information coming at me from every angle, and very little time to make decisions that would greatly affect my future. It was kind of a shitty week, you might say.

The fertility specialist did various tests and exams, where my husband and I learned that, yep, we were indeed fertile. Yippee. Too bad I was about to shoot my body full of drugs that could potentially ruin all that.

There are specific chemotherapy drugs that are known to have a damaging effect on fertility. Unfortunately, I had to get one of them. This was not an option. You can’t get pregnant if you’re not alive (lesson of the day!), so staying alive was my first priority, above and beyond everything else. And sadly, in the world of cancer, the best proven method of doing this is often by poisoning yourself.

We were given the option of retrieving embryos, which we could then “store” for  the future, if needed. At first, this seemed like a good solution. An insurance policy, in case the worst case scenario became a reality. (A very, very expensive insurance policy, mind you, as these procedures aren’t covered in Ontario for cancer patients.) With barely any time to think about it, it seemed like the smart thing to do. I got a bunch of prescriptions for shots I would need to give myself and a million consent forms that needed to be signed, and we were off to the races. At least, that was the initial plan.

As I began doing more research about the hormones I would have to take, despite some limited studies showing it was safe, I started to feel uncomfortable by the idea of messing with my hormones, especially when I have a hormone-sensitive type of cancer. It felt risky, especially when knowing that a) we might not even need the embryos and b) if we did need them, there’s not even any guarantee that the procedure would work. In many cases, it doesn’t.

I was also presented with the option of joining a clinical trial, where I could potentially receive a drug that could benefit me, targeting my specific type of cancer. If I chose to do the fertility preservation, there was a good chance the start of my chemo would have to be pushed, and I might not qualify for the trial.

To top it off, the thought of injecting myself with hormones and dealing with potential side effects from that and having to undergo the egg retrieval, at the same time as being in tremendous pain from my double mastectomy with immediate reconstruction and gearing up to start chemo… well, it became less and less appealing.

One night, I was filling out the form where we had to decide what to do with the embryos if we ended up not needing them. Would we donate them to another couple? Give them to research? Have them destroyed?

Suddenly, it all just felt like too much. It felt like I was doing what I thought I should do, rather than what my gut was really telling me to do.

After expressing my concerns to my husband, he admitted to having the same concerns too. We discussed it some more, and then came to our final decision that we were going to put the brakes on the preservation process, and have faith that things would work out for us. Dealing with the cancer felt like more than enough for us to have on our plate at that time. So with that, we put 100% of our focus into making me healthy. I joined the trial, began my treatment, and tried to push thoughts of babies and pregnancy far out of my mind.

None of this has been easy. I remember being so angry that I had to make such hideous choices. I shed a lot of tears, cursing cancer for destroying my dreams. I have wanted to have children since I was a child myself. Anyone who knows me knows this fact about me. We had hoped to have a mini S or mini J pretty much… right now. But cancer decided to show up and derailed the plans and the future we had envisioned for ourselves. At least for now.

So where does that leave me now? I am not quite sure. It is not really possible to tell what effects the chemo had on my fertility, since I’m taking a drug which messes with my hormones. And, to top it all off, I am not allowed to be pregnant while taking said drug… which I am supposed to be taking for a minimum of 5 years, and possibly 10. Or, I have the (not medically-approved) option of coming off of it early, which there are NO good studies to support, and possibly increase my risk of having the cancer come back and not surviving. So my big decisions are not over. Not even close.

It is hard seeing people around me getting pregnant and having their babies turn into toddlers. It is hard seeing photos posted at every hour of the day. I’m fairly certain anyone who has wrestled with any type of fertility issues can relate on that one. We live in a very baby-centric world, especially when you are my age. It ain’t easy. (Although I make myself feel better constantly by thinking of the vacations and nights out my husband and I can take whenever we please, and our ability to sleep in on the weekends as late as we wish. We often say “If we had a kid right now, we couldn’t be doing x,y, or z.” It makes me feel better… for a moment, at least.) If anything, this whole ordeal has made me much more sensitive and empathetic toward couples who are experiencing infertility problems.

I do have a lot of hope for our future, and our family. I know, regardless of fertility issues, there are options. I like to think that all of this sad stuff will eventually lead to somewhere happy. I need that hope, and I hang on to it.

Today

List time.

Things I am pissed about today:

The wind
That I think about dying way too much
That I might die young
The pain in my hip
The pain around my implants
The lesion on my thyroid
The pelvic pain that landed me in emerg two days ago (I am fine)
The new cysts that were found all over my ovaries
Never having a CT/MRI/Ultrasound without something new/weird showing up
The recent death of a girl with breast cancer who I used to see every chemo session. She was nice. And pretty. And a few years older than me
Cancer, obviously
Post-traumatic stress
Not knowing what to do with my life
That I might never have a baby
That everyone around me is having babies
That my life’s plans were derailed
That any regular pain or ache might be bone/brain/lung/liver mets
That despite all the hell I put myself through, the drugs might not have done anything
My awkward, impossible to manage hair length
War
Mean people
Poor etiquette

Things I am happy about today:

Cereal
My family
My husband
My friends
The smell of fresh laundry
Being able to walk
The blue sky
Upcoming holidays
Canadian healthcare
Indoor heating
My blanket
The roof over my head
Writing
The Downton Abbey finale episode that awaits me
Vacation plans
Chocolate, always
That my hair grew back
That the drugs might have worked
That it might not always be cancer
This kid:

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.

An update

Update on Steph for those who truly want to know the mundane details of my life right now. For those who prefer the happy dancing cool cancer chick moments, feel free to skip this one for now and I hope to provide some more of that soon enough.

-I’ve been ignoring most emails and phone calls. It’s nothing personal. I have very little energy and it’s been another rough week, probably the worst yet, and I’m finding it hard to talk to anyone right now. But as always, I appreciate the love so much and really really hope to have at least one or two friends after all of this.

-I have styes on my eyes. I’m sure Dr. Seuss would be able to make that into some sort of interesting storybook, but in reality, it’s not very exciting. Itchy. Red. Styes.

-My skin has turned grey. Not pale, but grey. I used to think being pale was kind of lame, but now grey takes the prize.

-I took a walk today. Spring has sprung. I’m still wearing a black hood with big sunglasses because I can’t really bear for anyone to see my face right now. I seem to get stares wherever I go. Sometimes I just want to shout at strangers on the street, I have cancer, it’s not contagious, get over it. I have come to realize how oblivious we all are to other people’s suffering. How we just walk by, stare, and ignore. I’m sure I have done it a hundred times. Now when I see someone who I think has cancer, I just want to hug them and cry and ask them to come to my home and build a fort with me and hide in it.

-I haven’t had a good sleep in a long time. Between my nightmares, body aches, hot flashes, and the raccoons that seem to enjoy scratching under the window, I can’t seem to make it through the night.

-I have collapsed into a puddle of tears on several occasions the past week. I’m not sure where it is all coming from, most likely exhaustion and the fact that I am almost completely cut off from the outside world and am in some form of pain most minutes of my day. In a moment of sobbing hysteria, I asked my husband if he could cover all the mirrors so I wouldn’t have to see myself anymore. It made me think of all the shiva houses I had been to when I was younger and how I would stare at the foggy mirrors. But I have no idea what people spray to fog the mirrors and am also far too vain to stop looking at myself, so my mirrors remain as they were.

-I watched The Princess Bride last night and it was the first thing in awhile that made me laugh, so thanks to Rob Reiner and all who were involved if you ever read my blog.

-I ate some beets today. Straight out of the jar. It’s a crazy, crazy life.

Things I’m grateful for today:

The sunshine
The comments people leave on this blog
Toast
Health insurance
The few eyebrow hairs I have left
Movies
My friend Rebecca who always says “that is so so shitty” whenever I describe the gross and weird things happening to me, instead of “it’s ok, you can do it!”
My friend Lily who buys way too many things for me
My good friends who check in on me constantly and stick around through the dark days
My husband who lets me soak through all his shirts with my tears and who tells me I’m pretty when I have styes on my eyes
My mother-in-law who sends me photos of rainbows
My parents who do everything
My siblings who are the only friends I see anymore
Everyone who sends me cards and nice things in the mail
The fact that I’m still here
Tomorrow

Living in the moment. For now.

Me, without a care in the world. Ah, to be young again...
Me, without a care in the world. Ah, to be young again…

For as long as I can remember, I have been an obsessive planner. I love to make plans, to organize, to prepare. And I’m quite good at it, too. Long-term goals, schedules. These are things I like. A fly-by-the-seat-of-your-pants girl, I am not.

With my cancer diagnosis, a lot of things came crashing down around me, and one of them was my ability to plan for the future. You might say that for everyone, cancer or no cancer, life is unpredictable and full of uncertainties. And you would be correct. None of us knows what the future holds, or what tomorrow holds, for that matter. However, in my case, things are a bit more unpredictable than they might be for the average 28 year-old. Or at least, I am more familiar with the fragility of life and forced to confront it in a way most young people do not have to.

Before, there were plans. Plans for family, houses, jobs, vacations. Regular things that regular people hope for and work toward and often take for granted. I was headed down a particular path, and things were going quite swimmingly. I had a very bright future, one which I took as a given. And why wouldn’t I? I was young, healthy, and had a lot going for me. I even remember thinking to myself, Life is going so well, I hope nothing bad happens. And then something bad happened. And I stopped making plans and thinking about the future, for the first time in my life. As someone who is not so great at the whole live-in-the-moment thing, I was suddenly thrust into that mode of thinking, without much choice.

People say things like when you have your own kids someday or when you’re retired someday and I nod and smile, allowing them to imagine such narratives, but I no longer let myself actually envision those scenarios anymore. I can’t. This doesn’t mean I don’t believe I have a future, or that I don’t wish to have many wonderful years ahead of me. It doesn’t mean I don’t have a positive attitude, or that I’ve given up. It means I have cancer. And it’s scary shit. And it’s unbelievably, excruciatingly difficult to acknowledge that there is the possibility that my plans for the future will be cut short. So for me, at this moment, it is just easier not to think about it at all. I can think about today and I can think about next week. I can plan for my treatments and organize my medical schedule for the next several months. That, I can do. But anything beyond that, I can’t plan for right now. I can’t see it. I hope that at some point, I will be a planner again. That I will allow myself to dream of all the things I used to and view them as real possibilities, within my grasp.

I don’t know what next year will hold for me. Or the year after that. I won’t be making any plans just yet.

But I will hope.

At least I haven’t lost my ability to do that.