Yawn. I am tired. That could be the theme of the past year, really: I am tired. It turns out that getting back into the swing of things is exhausting. People had warned me it might be. My oncologist said, take it slow. But I was all, whatever, I feel great, I have more energy than all of these fools, yahoo! I may have overestimated myself a tad, while underestimating the cumulative effects of the crazy-ass things that have happened to me in a very short span of time. Oops. My mistake.
I am still working part-time, slowly increasing my days and hours each week. Working is strange. I think it would be strange for anyone, after an extended absence, especially because my role at work has changed, so it’s an even larger adjustment. But my absence was so intense and surreal, that I believe it might feel extra strange for me. It is like I was asleep for a year, stuck in some crazy nightmare, and then I woke up and immediately returned to my old life. Yet it is hard to remember that old life, or feel like it is truly mine. I don’t feel part of that world anymore, not yet at least. I feel more at home in the hospital than I do almost anywhere else. More familiarity with my doctors and nurses than with old colleagues.
I feel very much like an impostor.
Yesterday I saw my surgeon, the wonderful man who removed my butt-ugly tumor. He said to me, I bet you’re getting pretty close to forgetting all about us. But I don’t think I am. I don’t think I will ever forget. Maybe think about it all a bit less, sure. But forgetting – doubtful.
Sometimes I find myself having flashbacks, like a soldier with PTSD. I’ll remember how it felt to lose my hair. How I couldn’t move my arms after my surgery. How my ears rang and my heart sped and my bones throbbed while I lay under my blanket, wondering if death was on its way. Sometimes there are triggers. The smell of the bubbles for my bath now reminds me of pain, when I was forced to take baths to ease my sore muscles and joints. A piece of ice floating in my cup makes me gag, reminding me of the terrible feeling that would wash over me as the chemo dripped into my veins, while I sucked on ice chips to prevent mouth sores.
Just a couple days ago, I was hit with a vivid flashback of the day I was diagnosed, sitting in my doctor’s office, hearing “cancer” for the first time. You’d think I’d be used to it by now, but it still upsets me, still shocks me right down to my core. I had cancer? What? Who? Me? No way. Not possible. My breasts were removed? My hair fell out? WHAT?! Did that seriously all happen to me? There must have been some kind of mistake.
Imagine? Oops, sorry young lady, the cancer thing was all a big mix-up. Never happened. Snap your fingers and you can go back in time and forget the whole mess.
During chemo, all I dreamed about was going on a tropical vacation. Somewhere quiet, with sand and a beach. I was filled with envy, while everyone seemed to be hopping on planes and jetting off somewhere, as I sat in a ball on my couch trying to find the physical strength just to get up and make it to the bathroom.
And now, it’s my turn. And you all have my permission to be jealous.
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.
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.
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.
This past Friday, I was once again a patron of the chemo ward. As you may or may not recall from previous posts, although I am technically done the chemotherapy part of my treatment, I still need to receive infusions every three weeks for one year. This is because I have an aggressive form of breast cancer, and there is an antibody that was created specifically to target this type of cancer. It has been referred to as “the most important advance in breast cancer therapy in 30 years.” Although it’s a bummer to have over a year of infusions, it’s a small price to pay to help increase the odds that I will be alive and kicking a few years from now. I am very grateful to be receiving this therapy, and to be part of a clinical trial involving another targeted drug. In conclusion, science is awesome.
My treatment this round went fairly smoothly. The only time I started to cry was when I was watching another young woman cry who was having trouble getting her IV started. I hate watching other people in pain. And despite the amazing nurses and staff at the hospital, the chemo ward can still be a fairly unsettling place to spend your time. Sometimes I see people who look as though they are about two steps from death’s door. I often feel like I don’t belong. Did someone make a mistake? Do I really have cancer? It still hits me like a punch in the gut sometimes. I don’t know if I will ever get used to being part of this world. I don’t think I want to get used to it.
I have been having some pretty severe muscle pains and stomach issues. But compared to how I usually feel right now during my chemo cycles, my energy is definitely about a million times better, as is my state of mind, so I’m very hopeful that the next year will not be as rough as the past several months have been. I am really praying that the worst is behind me.
Last week, my blog and I were featured on the website She Does The City. I am always very flattered every time someone contacts me asking if they can publish one of my posts or have me write something for them. When I first started this blog, I had no idea that it would spread the way it has or that it would actually create any type of impact. I have had many people write to me, telling me that I have helped them feel less alone while they are dealing with a cancer diagnosis, and these types of messages help give some sort of meaning to this absurd journey I have been on. Considering how isolated I have been, I have made so many connections with all sorts of people. Writing and having people urging me to write has truly been one of the only upshots of this experience. Something providing me with a purpose. So I suppose I should thank the internet, and modern day communication. And thank everyone who reads and reaches out to me and tells me I am doing something helpful during a very scary and very challenging time in my life.
Today I declared that I felt strong enough for some “cancer dancing” and danced around to various cheesy songs until I felt that my limbs were about to fall off. I was bouncing around for about fifteen minutes, which is fifteen minutes longer than I could stand a few weeks ago. And I didn’t fall down, despite the pain in my legs. An insignificant event for most. A major accomplishment for little ol’ me.
That’s my sister with me in the video. What’s the point in embarrassing yourself if you can’t take someone else down with you? Also, the scarf on my head was forgotten by a friend at my house one night, accidentally. Moral of the story: if you leave something in my home, it will most likely end up on my head.
I just went for a walk to get a sub. It took about 20 minutes total and my legs are burning as if I just ran across the country. When I think back about how far I used to walk, I can’t even imagine it now, but hopefully I will be able to build up some strength again eventually since my current physical state is probably close to that of a 90 year-old woman. All in good time. For now, I’m pretty impressed that I made it there and back and am still alive to tell the tale. Gold star for me.
I have been watching a bunch of TV, which is a good sign, because when I am at my worst, I don’t even have enough energy to to watch television. Which shows how much chemo destroys your ability to do even the laziest possible activity. I’m all caught up on The Vampire Diaries after falling behind for a bit and losing track of which ancient vampire was trying to kill which modern-day hybrid werewolf. I am aware that I am definitely older than the target demographic for this show, but lately all I want to watch are teen shows. I’m sure a psychologist would say it’s some sort of regression/coping mechanism, to avoid all of the very grown-up stuff I have to deal with daily. But I don’t think so. I just love shows made for 14 year-old girls. I have also been watching a ton of Felicity on DVD (thanks, Nicole!) since I somehow missed out on watching it as an actual teen. Very riveting stuff.
I wanted to reply to each of the comments on my last couple of posts because they were all so thoughtful, but I felt anything I could say would not do justice to the kind words you left for me. I couldn’t believe all the love I got after sharing the sad state I was in. Honestly, if you are feeling down about humans and their ability to show compassion for each other, I urge you to go back and read through all the comments people leave here. I am so lucky to have so much support coming at me.
I am starting to feel better again, in terms of my mood and body pains and fatigue. Unfortunately, I just can’t seem to really catch a break, and my eye troubles have not let up. In fact, today, I counted seven little styes on one of my eyelids. I’ve lost count of how many I have had now since last week. I am not sure why it is happening as it does not seem to be a common cancer thing. I also have permanent teary eyes so it is hard for me to see most of the time. I have walked into a few walls. In short, I look like a mess. I am seeing an ophthalmologist on Friday so we’ll see what that brings. If they try to put anything in my eye, you will likely hear my screams wherever you are. After everything I have been through, I still feel squeamish at the idea of anyone or anything getting near my eye.
So with the eye troubles, I believe I have had every part of my body have some sort of issue. But it’s okay guys, it could be worse. I mean, my head could fall off. There’s always that.
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 comments people leave on this blog
The few eyebrow hairs I have left
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
When you wake up one day
and big chunks of your hair are falling out
because you’ve had your first dose of chemotherapy
and your chest aches
and it is hard to move freely
because you’ve had your breasts removed
and you have ugly scars all over the place
and you know everything is about to get a lot worse
you can crawl into the corner and put a bag over your head and scream
or you can put on a really cheesy pop song
and dance really poorly
even though your plastic surgeon would probably not be too pleased
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.
I received a lot of really kind and encouraging messages after my last post. I know a lot of people out there are concerned about me and I didn’t really have the energy to respond at the time. So I wanted to check in with my faithful followers and let you all know:
In fact, I am doing quite well, both emotionally and physically. As quickly as the sickness and misery from the chemo seems to hit me each time, there is also this wonderful break where I bounce back and wake up from the nightmare. Each time, it gets a bit worse, and each time, I am in such agony and my emotions become completely warped (especially this last time, which I attribute to the high dose of steroids I was on) and I don’t believe it will ever end. This past round, I was convinced that I was dying and would never see a good day again, despite what anyone told me. The combination of feeling awful and being on strong drugs really does crazy things to an otherwise (mostly) sound mind.
But sure enough, it passed, and I didn’t even notice it happen. The puffiness in my face and bloating in my stomach seemed to go down, which I was thrilled about, as I had convinced myself I was becoming obese from laying in bed too much. But I now believe it was steroid-induced, so that’s certainly a nice treat. The idea of being fat and bald had me feeling a bit down.
I also have been gaining my energy back, which feels great. In fact, on Friday, I went on a mission with the help of my mother and decided to redecorate my bedroom. I spent four hours shopping, which I really believe was some sort of miracle. I only had to lie down on a floor model bed very briefly. And I didn’t pass out at Walmart, which is also amazing, as I typically want to pass out in Walmarts even when I am in perfect health. I also helped carry my new nightstands up the stairs, which was quite a feat, considering I couldn’t even get myself up the stairs at this time last week. I set everything up on my own and felt like the most productive chemo patient in the universe.
The next day, I spent another several hours on my feet, throwing out loads of crap that had piled up in my home over the years. Old makeup, expired cold medicine, receipts. The types of things you just ignore for too long, making it progressively more difficult to tackle as time goes on. I went on a complete rampage, tossing things out and reorganizing. I don’t know where the motivation came from. I suppose having less clutter makes my brain feel less cluttered. And as you all know, I have a lot going on in my brain, so any mental space I can free up is a big help right now.
When I feel better like I do now, with only a few side effects present as opposed to several, it is hard to accept that I have to endure another round. I was hanging on by a thread a mere few days ago. Why would any rational person continually subject themselves to that kind of torture, when they know precisely what will happen?
I suppose, the answer, is that the alternative is worse. So, there’s that.
Friday is my last chemo. You’d think I would be excited, knowing it’s the end of this chapter, but I’m not. It’s not like I finish up the day and suddenly feel super. I still have to go through the suffering that comes after. I still have to drop all the way to the bottom once again and wonder how long I will stay there. I also am afraid to let myself get excited. To feel complacent. I am scared to let my guard down and believe that things really might start to look up. To get easier. What if it’s not really the end? What if I have an early recurrence? What if they throw me right back into chemo? What if, what if?
But for now, I’m not going to bother with that. For now, I’m not going to think about Friday and the week following it. For now, I’m feeling good. Almost like a normal human being. And in my peculiar case, that is certainly something to celebrate.