A couple days ago, I attended the funeral of my great-aunt, the eldest member of my family tree. She was an amazing woman who lived a full and long life. As the rabbi and members of her family spoke about her, I began to think of the legacy she left behind and I realized that a good way to assess if you’re living the life you want to is to imagine what someone would say about you in your eulogy. What will they remember about you? What are the highlights they will touch upon? Is your career noteworthy enough to mention as one of your great accomplishments? Your charitable acts? Your kindness? The family you have created? What will you leave behind?
I’ve thought a lot about my own funeral. I imagine this might be somewhat normal, when you’re faced with a life-threatening disease. But maybe not. I think I’ve always thought a bit more about death and such things than the average person. Six Feet Under is my favourite TV show, after all, and I don’t think that is exactly a coincidence. I’ve wondered what would be said about me at my funeral. The stories everyone would tell. I imagine who would show up – perhaps people from my past whom I haven’t spoken to in years. I like to imagine that it could be a happy celebration of life, but I know it would not be so. When someone young dies, it’s seen as a tragic event. We think of the person they could have become and the many things they wanted to accomplish.
As much as I try to live in the present and not think about the many what ifs, I sometimes find myself consumed by the knowledge that I might not survive this brutal disease. The next few years for me are critical. And there are many people who have a recurrence many years down the road… 6 years, 8 years, 10 years. You get comfortable, and then BAM, you are told it is back, this time somewhere else in your body, and the situation is bleak. I hate that this is a possibility. I hate that because of my age and the genetic make-up of my tumour, my risk is higher. I am aware that the odds are in my favour, with all the treatment I have done. But the chances of an unhappy ending are still much greater than I am comfortable with.
One of the hardest parts of thinking about all this heavy stuff is imagining the people I would leave behind. I can sometimes come to grips with the idea of me, myself, not existing anymore. But when I think of the pain this would leave, with my husband and with my family… well, let’s just say I try my best not to let my mind go there. I guess I should feel grateful that I’m loved and that there are many people who would like me to be alive. Most would say that’s a good thing. But the idea that I could destroy the happiness of so many people is a lot to bear.
When my mind spirals down these dark places, I try to snap myself out of it: I say to myself, Don’t worry about tomorrow. I’m still here. Everything is okay today. Today, I’m alive. And then I move on and go on with my day and try to live a normal existence, the best I can.
Tomorrow is my 19th treatment. 54 weeks of having drugs pumped through my veins. That’s a long time. But I’m hopeful that the drugs are doing their job and that my story will have a happy ending. Today, that’s what I feel like believing.
A mouse just ran across my kitchen floor while I was putting groceries away. I screamed “OHMYGAWWWWD NOOOOO!!!!” and ran down the hall shrieking and hyperventilating. There is almost nothing that gives me the heebie-jeebies more than mice. In fact, I’ve even had recurring dreams where I am being attacked by vicious mice. True story.
As I hid in my living room, with the door closed, I tried my usual mantra of calming myself down: You’ve had cancer. This isn’t so bad. It’s not cancer. It’s just a mouse. Nothing can scare you anymore.
As the kids these days say – EPIC FAIL.
As much as I try to employ this type of logic all the time now, it rarely ever works. As I have said before, I am still fundamentally the same person. Sure, I had cancer. But does this now mean I am not completely, irrationally petrified of a tiny little mouse? Have I been cured of all my pre-cancer phobias? Hellz no.
I just got a notification from WordPress congratulating me on blogging for one year. Happy anniversary, blog! What a pal you’ve been.
After I was diagnosed, I had thought of starting a blog where I could document what I was going through. But I put it off for a couple months. Not because I was afraid of exposing myself or revealing I had cancer. Not because I had nothing to write about. But because I was worried writing a blog would kill me.
I had been searching online for blogs written by young people with cancer, to find something I could relate to. But the more I searched and the more I read, the more it started to feel like everyone who wrote a blog about having cancer ended up dying. I can’t tell you how many blogs I found, particularly of young women with breast cancer, whose most recent entry was either about their cancer metasticizing, or an entry written by a loved one informing the readers that the writer of the blog had passed away. It seemed like for every one blog I could find where the person was alive and well, there were ten more where the opposite was true.
So I convinced myself that if I were to start a blog, I would be writing my own death sentence. That my blog would join the many other young adult cancer blogs, with a sudden, abrupt ending, letting down all those who stumbled upon it, looking for inspiration and hope, as I had with so many others. I felt like writing a blog, and having people read it, would somehow curse me, and set my fate in stone.
I’m not sure what changed, but eventually I realized this was a crazy way of thinking, and blogs do not have the power to kill you. At least I really, really hope they don’t.
Writing this blog has truly been a gift to me, connecting me with so many awesome and lovely people all over the world. It has given me a healthy dose of confidence, allowing me to feel both brave and vulnerable, and uninhibited in my self-expression. It has made me feel less alone and isolated during a very lonely time, being the dependable friend I so badly needed. It has forced me to confront some very deep and dark feelings. It has also turned me into some sort of writing machine, where I feel as though I can’t stop, and I won’t stop (to quote the very inspirational Miley Cyrus).
So, happy birthday dear blog, and thanks for all you have done. I will continue to update you and visit you as often as I can, as long as I have something to say. And you can return the favour by not killing me. And if it turns out you do possess some sort of mystical power to decide who lives and who dies, please choose the mouse. Thank you.
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
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
Things I am happy about today:
The smell of fresh laundry
Being able to walk
The blue sky
The roof over my head
The Downton Abbey finale episode that awaits me
That my hair grew back
That the drugs might have worked
That it might not always be cancer
So I think this is the longest I have gone without blogging since this all started. And that is because there hasn’t been much to say… which is good. Uneventful is good. I have had enough excitement to last for a long time, and I’m okay with boring and mundane for a bit.
Last week was my first official full-time week at work. It’s strange, because I work in a new environment, where I’m fairly certain many people aren’t aware of my history. Sometimes I want to respond to emails: Hi, I had cancer, and you should know, considering the effects of my treatment on my brain function and how extremely tired I feel all the time, it’s pretty amazing that I am managing to respond to you and give you even a half-coherent answer to your question, so please say “thank you” and give me a cookie for being awesome. But I would probably seem insane, or get fired, so I haven’t followed through with my urges to be “that crazy girl” just yet.
Speaking of being the crazy person at work, this guy is my hero.
There have been some days recently where I have felt so fatigued that I am convinced something is wrong. I no longer really know the difference between regular tired and cancer tired, because I have been cancer tired for so long and have not functioned in normal day-to-day life for quite some time. I can’t remember if this tiredness is just something average, healthy people feel from lack of sleep, or a long day at work. I guess eventually I will have to start trusting my body again and not think that every slight malfunction is a sign of the Big Bad Cancer. But my body broke that trust in a pretty major way, and I think it will be a very long time until I can forgive it and move on. I’m holding a bit of a grudge, you might say.
Lately I think about cancer and recurrence a little less. I am too busy with so many other things. As I get further away from it, it seems more absurd to think about the cancer coming back. No way, that can’t happen. Look at me, I’m fine, I’m great, everything will be great. I feel these things more and more now.
But then just as quickly, I’m hit again with reality. Wait a second. There’s a total possibility that I’m not fine and that this possibility will be confirmed in the near future and that I’m really just a dead woman walking. Sometimes I feel like I’m fooling myself, like there’s no way this bit of normalcy is going to last. I go so far as to imagine my doctor giving me the news (again), yet this time, it would be paired with the whole cliche, “You have this many months/years to live” spiel. The fact that that could actually happen is really quite terrifying.
And then I snap out of it. Back to my life, where I have bills to pay, dinner to make, a job to do, people to see, places to go, and all that good stuff. Because you see, in a normal, boring life, there really isn’t much time to think of things like cancer and dying.
Time for some more tips! To read the first installment, click here.
If your cancer treatment drags on for awhile, as mine did, you will find you have a considerable amount of downtime. You will likely think to yourself, “Great, this will be the perfect time to read those huge novels I haven’t had time for and finally watch the entire box set of The Wire.” WRONG! So very wrong. Here’s the thing: your “downtime” during cancer treatment is not fun. It’s not relaxing. In my case, most of the time I felt like absolute crap. There is no way I could have focused on a book. Even reading a tabloid was challenging for me at times. And stimulating television or cinema? Don’t even think about it. When you are in pain and can barely lift your head up, you don’t want to watch anything thought-provoking, intelligent, or heavy. There is a reason that I watched two entire seasons of The Real Housewives franchise while I was doing chemo — the show is complete garbage and requires a very low level of mental acuity to follow.
There were many films I thought I would watch while I was sick. Classics, documentaries, award-winners. WRONG AGAIN! I found the only DVD’s I wanted to watch were those I had seen a thousand times and provided comfort. Back to the Future, Edward Scissorhands, Big, Pretty Woman, Hook, every Disney movie ever. It didn’t matter if I passed out in the middle of the movie or just closed my eyes while I listened to the buzz of the TV. I didn’t need to focus and pay attention to what was going on. The purpose of TV and movies was 100% distraction. A way to pass the hours, in hopes that the days would go a little bit faster. A small respite from reality.
So in conclusion: Honey Boo Boo = Good. Six Feet Under = Bad (although it is my favourite show of all time, but it’s about the last thing I’d recommend you watch while doing chemotherapy). Dumb and Dumber = Good. Memento = Bad. Got it? Good.
Dealing with stupidity
If you have cancer, chances are, people are going to say some pretty dumb things to you.
People will ask you details about your prognosis, or say thing like “You’re going to be fine, right?” They will compare you to their 95 year-old great grandmother who had a small non-invasive cancer that was 100% different from the cancer you have. They will tell you stories of someone they knew who had cancer, that end with the person dying. They will make awkward comments about boob jobs, insinuating that a regular boob job is in any way similar to having your cancerous breast surgically removed. They will try to show you they know “exactly how you feel” by comparing your cancer to a very temporary, highly non-threatening malady they suffered from 5 years ago. They will say, “I know you are going to survive this” even though you are painfully aware that you might not survive this and that it has nothing to do with your positive attitude, or lack thereof.
Yes, people say some dumb things. This is because most people have no idea what to say or what to ask when someone has cancer. There is no guidebook. It’s understandable that people will say the wrong thing and mess up from time to time, as I’m sure I have many times in the past, pre-cancer. You have to give people a break. 99% of them have good intentions and have no idea that what they’ve said might be hurtful/anxiety-provoking/insensitive/ignorant.
Of course, if someone says something extremely stupid or blatantly offensive, you can always kick them, or take the high road and explain to them why what they’ve said has upset you. But all of that will get exhausting, fast. I just choose to smile and nod. That is usually the answer to dealing with most things: Smile and nod.
Using the Internet as a resource
Ooooh this is a tricky one. I love the internet. I love having information at my fingertips. But as anyone who has ever Googled a health issue knows, the world wide web can be a very dangerous place. So here is my advice to you: TREAD LIGHTLY. Seriously.
There are some great things you can get from the internet if you have been diagnosed with cancer. Friendly people on message boards sharing the tricks of the trade for dealing with treatment side effects. Reputablewebsites that can allow you to better understand your disease and your treatment options. (Note: there are also lots of bogus, scammy sites out there, so you will need a basic level of media literacy to navigate online resources. Your hospital should also be able to provide you with a long list of reputable websites.)
However, you need to be careful with how you use this information and how far down the rabbit hole you wish to go. Just a few evenings ago, I was reading some article, that led me to search for more information, and eventually I ended up stumbling on some studies that provided some very upsetting stats on survival rates for young women with breast cancer. As I read more and more, I became more anxious and riddled with fear. I burst into tears and sobbed to my husband, “I’m… gonna… dieeeeee… it’s… not… faaaaaairrrr waaaaah bleerghhhh.” Something along those lines. And I had been feeling fine just moments earlier. But a simple click of the mouse here, and another one there, and I had stumbled upon some really depressing information, that was not helpful to me in the least.
You’re going to find some info on the internet that you don’t like. I mean, hi, you have cancer. People die from cancer, and there are many things on the internet that wish to remind you of this fact, at every twist and turn you take. You must learn to shut out the noise. Remember that what you’re reading is some study of some group of people, and you are an individual. If the stats say that 99 out of 100 people died, that still means one lived, right? And that one person could be you, right? Definitely. At least, that’s what I tell myself. I also try to remember that even the best studies have their faults, and even the most thorough researchers cannot be 100% accurate all the time.
I could spend hours reading expert opinions and numbers that tell me the likelihood that I will or won’t be around five years from now. And sometimes I do, because I can’t help it. It’s like stumbling upon a horrific car accident and not being able to turn away. But you know what? You really should turn away. Keep on driving. Keep on moving. Because, for today, you are alive. You are not a statistic. And you really should be making better use of your time spent on the internet, like watching dumb clips on YouTube.
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.
It has been awhile since I’ve given everyone any type of real update, and since that was the initial point of this blog, I figure I should probably do that. You might be thinking, she’s done the scary part of chemo, we’ll never hear from her again! But don’t you fear, there is much more to share and the journey continues, one day at a time.
In terms of my surgery recovery, it has gone quite well. I always feel pretty satisfied when the doctors examine me and say that everything looks great, as if I had anything to do with it. I still suffer from body pains, mostly in my legs, which is assumed to be a residual effect from chemo. I worry that the pain will always be there. The price paid for living? Maybe.
I’ve been going for long walks, pushing through the aches, and I feel a bit stronger each day. I’ve also gotten pretty good at knowing my limits and being very blunt when I realize I need to go home and rest. After spending so much time alone, cooped up inside all winter, it can be a bit exhausting and overwhelming to be in social situations for long periods of time. That being said, I have loved spending some quality time with my friends the past couple weeks, catching up on their lives, and talking about non-cancery things. I have such good friends. I am lucky.
Hair update: There is not much to report on that front. I look like a newborn baby. Or a balding old man. Take your pick. There definitely has been some growth, but it’s very thin and sparse, and my scalp is still very much visible. I have read that the drug infusions I still receive can slow the hair growth process. As someone who used to cry because my hair was too thick, I now find myself using fancy volumizing shampoo that promises plump looking strands. The irony is not lost on me.
So, next steps. I have been hesitant to start really thinking or talking about the next phase of cancerland, because I really just want it to be over at this point. Now that I am feeling better and feel a bit of my “old self” creeping back in, I want to just ignore all the cancer stuff, erase it from my memory, pretend it never happened. I want to move on and get my life back. But my road is a long one, and it ain’t over till the fat lady sings. (Someone better hire a fat lady to sing to me when it’s actually over.)
In a few weeks, I will begin my radiation treatment. Many months ago, when I was writing about my frustration over having to make impossible decisions, this was one of them. To radiate, or not to radiate. That was the question. And I decided, since I’m having so much fun with this cancer stuff, why not throw that into the mix as well. Just kidding. The thought process was not nearly that simple, though I wish it was. The situation is incredibly complicated and I’m not going to describe all the particulars, for fear of unleashing the anxiety I am trying to squash surrounding the subject. The bottom line is, radiation is on the horizon.
Side effects may include the following: Skin burn. Blistering. Redness. Fatigue. Cosmetic defects. Superpowers.
This week, I will be undergoing my simulation where they will map out my treatment zone. This will involve getting several small, permanent tattoos on my chest. Never thought breast cancer would be the reason I would get a tattoo. But there you have it.
I also will soon be starting my hormone therapy, since my cancer is fueled by certain hormones. This will be in the form of a pill, which will be quite a nice change from the way I’ve become accustomed to receiving my drugs. There are all sorts of unpleasant side effects possible from this little pill. The list is long. The most common ones are: Hot flashes. Weight gain. Hair thinning. So I will be a fat, menopausal, bald man. It’s just all so glamorous, I can hardly stand it.
So, that’s essentially where I’m at. Mentally, I am in a bit of a strange place. I am feeling happy, and hopeful, and enjoying every second of my life, with a deep appreciation for every minute that I am allowed to feel good. Every step I can take, every hour that I’m not ill in bed, feels like some sort of small miracle. Yet it is during these happy moments that I am also filled with anxiety and fear. The fear of not knowing how long it will last, or what the future holds. Or what it doesn’t hold. The fear of my lifetime of happy moments being much shorter than everyone else’s lifetime of happy moments. I feel this need to hang on to every second. To pause time. To soak up everything and everyone, for fear it will all be taken away from me.
This is what it is to have had cancer. To have danced with death. To have lived through hell. This is what I’m stuck with now. The good, and the bad. So what do I do? I go on.
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.
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.
This week has been a long one. On Tuesday, I was at the hospital almost the entire day, dealing with various appointments and consultations, and an unfortunate mix-up with my blood. I had to hear more things about my “prognosis being slightly worse” because of my age and “greater chances of it coming back” because of X, Y, and Z, and blah blah blah, and again process the idea of more treatment, which is starting to feel never-ending. It is difficult not to get upset after these types of conversations. My typical routine is to get through it, keep myself composed, ask all the right questions, and then go home and scream and cry and shout “I don’t want to dieeeeeee!” and hyperventilate for a minute or two. Then after exhausting myself, I usually put some crap on the TV like The Bachelor (my saving grace as of late) and distract myself until the next wave of panic hits for one reason or another.
Needless to say, it is exhausting. I keep telling people that I am bored. But it’s not the bored you are thinking of, where I have nothing to do. In fact, I often feel like I have too much to do and not enough time. It is more a case of an overall boredom with cancer. I am bored of dealing with it, talking about it, stressing about it. Bored. I want to be focused on something else. I would rather be complaining about the cold that many people on my Facebook seem to have. I would rather be staring at a wall, watching paint dry, or scratching my fingernails across a chalkboard. Essentially, I would rather be doing almost anything. That is where I’m at.
I have been experiencing some bad pains in my back the past couple days. For the average person, back pain would be of little concern. But anyone who has or had cancer can tell you that any new type of pain can be a cause for alarm. It is nearly impossible not to quickly jump to the conclusion that bad pain means the cancer has spread. I wish my brain did not go there, to such a dark place. I wish I could brush off pain the way other people are lucky enough to be able to do. But I can’t. Will I ever be able to? I’m not sure. But for right now, I am really hoping the pain gets better, because I don’t need a new worry to add to the list. The list is getting awfully long, my friends.
Tomorrow I go for my next chemo, which involves a new regimen. The infusions will take a total of 5 hours. With the typical wait times, I will likely be in the hospital all day. Please feel free to suggest fun things to do while sitting in a chemo chair for 5 hours.
The new chemo involves a drug which is typically known as one of the more horrendous chemo drugs one can receive. Fun possible side effects include neuropathy, debilitating mouth sores, terrible body pains and aches, loss of nails, and extreme fatigue, among others. As my oncologist said, I don’t think you’re going to like it too much. I should mention that over the next few days, or possibly week, I likely won’t be too great at responding to any emails or messages. Know that if I don’t answer you, I am most likely lying under my covers in the dark listening to some sort of “Songs for sad emo wussies” playlist on Songza.
I will also be starting my first round of the drug that will hopefully have a life-saving effect on me. And in addition, I start my clinical trial drug, where I will either be receiving a real drug, or a placebo. I will not know. Please cross your fingers for me that I receive the real deal. My chemo drug also has a tendency to cause severe allergic reactions, which is why I am currently hopped up on steroids and will be for the next couple days. So please cross your fingers as well that I don’t have a severe reaction when they start the drug. In fact, cross your toes too, if you have the ability to do that. Lots of happy thoughts tomorrow, if you can spare some.
On a slightly cheerier note, this week was a really great one in the I’m-a-cancer-patient-so-I-get-lots-of-gifts arena. I received a handmade tshirt from an old schoolmate (and former prom queen, hollaaa!) who now lives in New Zealand. She somehow created a stencil of me wearing a scarf and incorporated a cupcake theme and painted it on, and the whole thing was beyond impressive to me. I wore it to the hospital yesterday, proudly. I also got another package from the The Canary Islands (yes, many of my friends live in weird, exotic locales) which included a super soft sleep mask that I will likely bring with me tomorrow in hopes that it induces a nice chemo coma. And I got some more pretty nail polishes from my new pen pal, who volunteers to send me things through an organization, out of the goodness of her kind heart. On the food side, I have some soup, mashed potatoes, cookies and more goodies waiting for me. You all have no idea how much these things brighten my day. Well, hopefully you do. Because I just told you.
That’s all I wish to share for right now. Think of me tomorrow, with my hands and feet submerged in buckets of ice (something I have to do to try to prevent finger and feet problems). Hopefully that creates an interesting picture for you.