Tag: young adult cancer

Another part of the story

Posted on by Steph

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.

The waiting game

Posted on by Steph

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

Posted on by Steph

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.

Stuff

Posted on by Steph

Hi there! I don’t really know what this post is going to be about. Just stuff, I guess. So here’s some stuff:

If you’ve been following my Facebook page, you might know this first bit of news. I’ve started going out naked. Ok, no, not that kind of naked. But naked up top. On my head. I did it for the first time on Saturday. First to a street festival, then to see The Book of Mormon. I had initially told myself (during one of my many self-talks) that I wasn’t going to go out sans head cover for awhile still, until I really felt like I just looked like any other lady with short hair. But I’m an impatient person and I got tired of waiting.

At first, all I noticed was how cold the wind felt when it hit my head. Hair really accounts for a lot of one’s body warmth. After awhile, I kind of forgot about it, although it’s hard to ignore the stares that I get. My sister says they stare because they think I’m pretty, but I’m not sure I’m really sold on that. I think most people stare because they are trying to figure out what my “deal” is. And to be fair, I’d probably stare a bit too.

When I catch my reflection in a window or mirror, I can’t help but hear “Well, Sinead O’rebellion…” over and over in my head. If you have no idea what I’m talking about, you should probably watch more movies.


Sometimes, I look at other people and try to imagine what they’d look like with no hair. Or I see people with hair like mine, and I tell myself I look better than them. I realize that’s really terrible and I probably shouldn’t be admitting that out loud. But I do what I gotta do to cope. And if convincing myself that everyone else would look ugly bald is the ticket, then I’m going with it.

I’ve started taking photos to monitor my hair growth, because otherwise, I don’t believe it’s growing. Maybe these photos will help someone going through chemo, because I can’t tell you how many times I tried to find images of people’s post-chemo hair growth.

Today, bird's eye view.
Today, bird’s eye view.
Front view
Front view. I’m not really sure what colour my hair is at this point. Many people have grey hair post-chemo. I wouldn’t say mine is grey, but it’s definitely not the deep brown it once was. Kind of a mouse-y brown. But I imagine it is temporary.

You also might be interested to know that my body hair is returning in full-force. Just in time for summer, swimsuits, and short shorts. Yippee!

Today I had radiation #4. Only 21 more to go! Oy.

At this point, although it’s very early days, I still have no complaints besides some issues with mistakes in my schedule that hopefully will not keep happening, now that the staff know I am a force to be reckoned with. I’ve gotten pretty good at holding my breath with a tube in my mouth and a plug on my nose. Maybe after all of this, I can become a champion scuba diver. Does such a thing exist? I don’t know, but regardless, I don’t think that is my calling.

Today I also decided to pop into the lab to get my routine blood work done. My last couple tests had one level increase that prompted a new wave of panic in me, even though my doctors told me not to worry about it. But once I learned what this increase could possibly signify, it was hard for me to ignore it. So I was a bit hesitant to check my results this afternoon, but as mentioned previously, I am extremely impatient. So I held my breath and checked, and what do you know. Everything is back to normal. All green check marks. This is the first time I’ve seen everything be normal in awhile. And even though no one believed my previous results were anything to write home about, I still feel relieved. I like seeing those bright green check marks. Hello, I’m a straight A student. And patient. Anything less than a check mark is just insulting.

So, there you have it. Some stuff. More to come soon. You can count on it.

Radiation Update

Posted on by Steph

Dear Diary,

Today I had my first radiation treatment.

I actually wasn’t anxious at all going into it. I think that my family and friends were more nervous about it than I was. Again I am quite astounded at how much I have changed since finding that lump back in September. I am slightly hardened, in a way. Acclimated to all of these treatments, and to the hospital walls. This isn’t necessarily a good thing, because I never want to get used to this as my life. But it does help me face each new challenge. Mentally, I do feel a lot stronger than I did before any of this started. Braver, I guess. None of it by choice, but nonetheless, a new me has certainly emerged out of all this mess.

As I waited for my treatment to begin, I chatted with an elderly man who has a tumor somewhere near his rib. He had had radiation previously, so he shared his experience with me. His doctors are considering chemotherapy as part of his treatment, so he asked how I fared with that. And there we sat, swapping war stories. Me and this 80-something year old man. Another cancer friend. You should know you’re still a very pretty girl, he said. I liked him. I hope he doesn’t have to do chemo.

I had two very nice radiation therapists bring me into my treatment room and set me up, making sure I was nicely lined up with the machine, thanks to my four little chest tattoos. Then they inserted my breathing tube. It was a bit more difficult than the simulation, due to the congestion I still have from my cold. But prior to beginning, one of the therapists remarked that it was quite impressive how long I had held my breath in the sim, so I knew I had to live up to my reputation and not screw it up. And I didn’t. I sailed right through it, and then it was over.

My new best friends for the next couple months. Cream, lotion, ointment, and aloe. Radiation 101.

Honestly, I was smiling through most of my treatment. I don’t even know why. There are lots of bad and scary things that can happen from radiation. Not usually immediate, but further down the line. But I guess I just felt happy to not be in chemo. To not be in pain. And to be kicking the shit out of my cancer, which has clearly become one of my favourite pastimes.

I met up with my sister after. Since she’s a medical student, she is often near the hospitals, which is convenient for me. I got some lunch, then we walked to the health food store, where I got a few items I needed, and some I definitely didn’t but couldn’t resist (chocolate quinoa crunchies, my new fave). And then I went home.

Radiation day complete. One down. Twenty-four more to go.

The main side effect from radiation is supposed to be fatigue. I can see how it would get quite tiring, even without the effects of the actual treatment. Just going to the hospital every day, back and forth, takes a lot out of you. I already don’t really feel like going tomorrow, and I’m just beginning. But I will push through it, and hope it doesn’t get too rough. I don’t want to anticipate anything bad happening. Maybe it will. Maybe it won’t.

For now, I am smiling.

Post-radiation. Feeling my new hair that's slowly growing in. So soft, like a newborn baby. A newborn me.
Post-radiation. Feeling my new hair that’s slowly growing in. So soft, like a newborn baby. A newborn me.

Life moves pretty fast

Posted on by Steph

Haven’t updated in awhile, but don’t worry, I’m still here. I’ve just been trying to live my life a bit. I haven’t really been able to enjoy any “recovery” period, because I’ve been sick or struggling with side effects every time there was any sort of break between treatments. So having this time off before starting radiation has been a pretty nice change of pace. Never underestimate the body’s need to heal after being physically and psychologically tormented for months on end.

I’ve been saddled with a cold the past few days. It’s a bit of an annoyance to be “regular sick” during a break from being “cancer sick”, but that’s all it is. An annoyance. Once you’ve dealt with the Big C, a cold ain’t no thang. I would take a cold over cancer any day. Although, I’d also take neither, if I had the choice. But maybe that’s being too greedy.

The weather outside is strange today. One minute it is raining cats and dogs, then bright and sunny and cheerful, then grey and cloudy and windy, as it appears to be right now outside my window. It’s a bit unpredictable, which is precisely how my mood and general outlook on life is these days.

One minute, I am happy, full of energy, enjoying the health I seem to be regaining. The next, I’m exhausted, feeling betrayed by my body and resentful that it can’t do all the things it once could, with ease.

And at another moment, I am hopeful, thinking of the future, entertaining the notion that I could actually live a full life, filled with fun and laughter, with cancer being nothing more than a distant memory, a bizarre detour that I will never take again. And then I read of someone with my disease who didn’t make it, or I get a test result that plagues me with anxiety, and I feel suffocated with fear. Burdened by the reality that despite everything I am doing, you never know if it was enough, unless you learn that it was not. Scared of never getting old, of not being here, of the world going on without me. Bitter that I even have to think about these things. That they are a real possibility. And that as hard as I try to control it all, it is out of my hands.

I’m sure anyone with a cancer diagnosis can tell you that it is all incredibly confusing. You want to live your life the way you did before. You want to be normal. Like everyone else, you want to feel like you have all the time in the world. Yet there is this cloud that looms over you. The knowledge that, at any moment, you may be told your life expectancy has shrunk quite substantially. That you’ve run out of time. These are big thoughts for a young person to have to grapple with.

I am so envious of those who still maintain their innocence. Who take it for granted that there is still a long and winding road ahead of them. Who believe that nothing bad will ever happen to them. I think it’s a beautiful thing, to feel protected and safe like that. Ignorance truly is bliss, in many cases. I’m sure I felt that way at some point, the feeling that nothing could touch me. I think we all want to feel that way. It’s what gets us through. Unfortunately, that innocence is long gone for me. I see the world through different eyes now. Nothing looks the same, and I, most definitely, am not the same.

But maybe that’s not all bad. Maybe there is something to gain from a new perspective and from being smacked in the face with the harsh reality that none of us is invincible. That life is short, no matter how you slice it. We are all just floating around, trying to do the best we can, and having no clue as to how or when it all might end. We’re all trying to make sense out of life, attempting to find answers to the Big Questions.  I just hope I still have a lot of time left to figure it all out. Because I’m certainly not done yet.

Today is National Cancer Survivors Day. They say you are a survivor from the moment you receive a cancer diagnosis. So I guess I’ve been surviving for a bit now. Happy day to me.

Someone better get me a cake.

Sunny days

Posted on by Steph

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.

Surgical tales

Posted on by Steph

As I mentioned in my vlog, I will be having surgery this coming Wednesday. Why am I having surgery? Well, to answer that question, we need to go back in time a bit. Let’s take a walk down memory lane, shall we?

On October 19th, I had a bilateral mastectomy. In non-cancer terms, this means that both of my breasts were removed. Which was about as much fun as it sounds. I realize I never wrote about my surgery, since it happened prior to starting this blog. But it was quite a large piece of the fighting cancer puzzle, as this was when my ugly effing tumor was removed.

The decision to have the mastectomy was ultimately mine to make. Many women opt for a “lumpectomy”, where the tumor is surgically removed but the surrounding breast and tissue remain. Every situation is very different, and often complicated. The period of time spent making this decision was not an easy time in my life. I had just been given this bombshell of a diagnosis, was secretly running back and forth between work and hospital appointments, and had to wrap my head around the idea of losing my breasts, a month after I had celebrated my 28th birthday. To say I was overwhelmed would be an understatement. Looking back, I’m not even sure how I slept, or how I got dressed, or how I got up each day, without completely losing my shit. Every time I would go to the restroom while at work, I would touch my chest and feel the tumor. Yep, still there. It was real. And I wanted it out, as soon as possible.

After some thoughtful deliberation and research, and a bit of soul-searching, I decided I wanted to remove the entire breast on the tumor side. And if I was giving up one, I would send the other one packing as well. Although it was upsetting, I didn’t feel any great attachment to my breasts at that point. They were trying to kill me, after all. And I don’t respond too kindly to anything that threatens my life. So, bye bye boobies it was.

I’m not going to get overly detailed about the intricacies of the actual surgery or the weeks that followed. Waking up from that surgery was not easy. Breasts gone. Giant scars in their place. Surgical drains protruding from my skin. Lots of pain. I spent several days in the hospital, completely loopy and nauseous from the constant flow of pain meds through my veins. I can remember how angry I was that first week. When I was lucid enough to feel any emotion, it was anger. Accepting that I had been diagnosed with cancer was still new to me. And now I had no breasts and couldn’t get to the bathroom without help and couldn’t raise my arms. Nothing about any of it felt alright.

When a young resident came to check on me and we mentioned that the drugs they were giving me did not seem to be helping enough with the pain, she remarked in a condescending tone that it was not normal to be in as much pain as I was in. You might guess that I did not respond well to this type of comment, and you would be correct. I did not appreciate this doctor making me feel guilty for the pain I was feeling. Let me cut your boobs off and see how you like it, I might have said if I’d had any strength to even open my mouth at that point. I wanted to tear her blonde ponytail right off. It has been six months, and I still feel anger towards this woman, this stranger. For making me feel inadequate and weak a day after I had lost part of my body. She was a doctor. And a woman. A bit of compassion would have gone a very long way. Luckily, however, there were many other people who helped me get through it all, such as my husband, who slept on the hospital floor next to me for three nights. Not exactly the getaway we had hoped for as we approached our first wedding anniversary, but at least we were together. Nothing says romance like having your wife high on morphine and hearing screams coming from the rooms down the hall all night.

The weeks after were difficult, with many challenges (oh the irony of not being able to shave or wash my hair while I still actually had hair) but things got much easier as the days went by, and I healed well. Eventually I was raising my arms and getting back my strength and feeling almost normal again. Just in time to start chemo. And we all know how much fun that was!

This week, I go under the knife again for my reconstruction surgery. In other words, I’m getting some new boobs. For the past six months, I have had “expanders”, that were placed under my chest muscles at the same time my breast tissue was removed. Over the months, they were slowly “expanded”, like a balloon, with saline from a giant syringe needle. This was to stretch the skin to make room for the permanent implant. Although I have adjusted to having these weird turtle shells sitting on my chest, they are uncomfortable and tight and push on my ribs, and I won’t be sad to see them go. The implants should be more natural and more comfortable, which would be a welcome relief. (And if you’re wondering if I viewed this as my opportunity to have huge boobs, the answer is… No. Sorry to disappoint.)

I’m not sure how I feel about this upcoming surgery. I don’t really feel scared. I have been through so much. I don’t like the idea of being put to sleep again, and being cut again, and waking up in pain again. I would prefer not to be having surgery again and to get to enjoy the week and just have a break from it all, for a bit. That is what I’d like right now. But these days, I am not calling the shots. So I’ll  get dressed in yet another hideous hospital gown, do what they tell me to do, and let them “reconstruct” me and put me back together. As much as they can, that is. No new breasts will ever be able to replace the ones I lost. All that I’ve lost. But it’s a start.

Today.
Today.

 

Ringing the bell

Posted on by Steph

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.

Living in the moment. For now.

Posted on by Steph
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.