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
It has been a few days since my surgery, and I’m happy to report that I made it through. Thanks to those who have written to me. I’ve been a bit slow on responding but I appreciate your concern and warm wishes. Thanks to Katie S. for that sweet hospital gown, and Tiffany for the nice tea, and Maytal for the lasagnas and banana bread (which made the hubs very happy as well), and the Rock-it Promo team for all the fun products and DVDs, and everyone else who has sent cards and nice things. Thank you!
The surgery went well, from what I can tell. I didn’t get to actually speak to my surgeon after I woke up, but I assume if something had gone terribly wrong, I would have been informed. I don’t remember too much, because the anesthetic tends to do strange things to your memory, which is probably for the best. I do recall crying like a baby when a nurse started my IV through my wrist. I’m not sure why she chose my wrist, but she poked me several times and the pain was way more severe than I expected. I was in the middle of talking to a surgical fellow, when I realized I was in pain. So I did what any normal adult woman would do, and I pulled the blanket over my head and sobbed. Lately I have realized that my hospital crying sessions are about a 50/50 mix of emotional and physical pain. The instant my brain receives the signal that I am again in pain, however small or fleeting it may be, I am overcome with the realization of how much my body has been attacked and how much I have gone through since finding that lump, and the sheer absurdity of the entire thing. The tears come more from exhaustion than from anything else. I am tired of the pain, I am tired of feeling like some sort of botched science experiment. The tears are just inevitable at this point, and I let them flow freely, as they wish.
I also remember the mask being lowered onto my face, which I do not enjoy, as I am highly claustrophobic. Upon realizing this, the kind anesthesiologist did his drug magic and gave me something to knock me out before the real knock out. I made a comment about how ugly the ceiling was and how there should be something more pleasant to stare at while you wait to lose consciousness, and then that’s the last I remember. Lights out.
I was not in the hospital very long this time around. I wanted to go home that evening, and I believe I said to the nurse, “Get me the eff out of this place.” So she got the approval for me to be discharged and I didn’t have to sleep in the hospital and hear the chemo machines beep all night. A sound which now triggers a queasy feeling inside whenever I hear it.
I’ve been doing well at home. As people had told me, the recovery for this surgery is definitely much easier than the first, which I’m very happy about. I was only on the heavy drugs for a couple days, and now the pain is tolerable with no drugs, as long as I don’t move around too much. I have my stupid surgical drains, which I hope to get removed by my home care nurse in the next couple days. If you have no idea what drains are, consider yourself lucky. Don’t google it. It’s about as gross as it sounds.
The weather finally seems to be getting a bit nicer outside. I went for a walk today. And by a walk, I mean a few steps out my door and then back. But I got to feel the sun for a bit, which was nice. It’s days like these that it’s best for me to stay away from social media, where everyone is making grand proclamations about their love of springtime and all the fun things they’re doing today. It’s hard to relate to everyone else when you have tubes hanging out of your body. Right now, I am most looking forward to getting clearance to take a bath. You don’t realize how wonderful something like taking a simple shower or bath is, until that privilege is taken away from you. The little things.
I don’t have a current photo to post because I am not feeling particularly photo-friendly at the moment. But posts that are all text are a bit boring, so I’ll leave you with this old photo of me. At some department store, in Paris, laughing over something that probably wasn’t all that funny. I hope to be doing this again sometime in the future.
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.
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
I thought I should post something because I’ve ignored several messages this week and don’t want everyone to think I’m dead, seeing as it’s Valentine’s Day and all. So I’m here to let you know I am still alive. I’m not sure if I should regale you with the thrilling details of my week. It was not a pretty one. I don’t think I would wish what I have been going through on my worst enemy. Well, maybe Hitler, if he were still hanging around. But everyone else, I think I would spare. (Sorry for talking about Hitler on Valentine’s Day. I believe that must be some sort of faux pas.)
The agony and pain I have felt since the weekend has been nothing short of nightmarish. I had read many horror stories about the drug I was given prior to my treatment, and knew of the possible effects, but I believed maybe I would be spared. I had to, or else I wouldn’t have let them hook me up to the poison so willingly. A lot of people believe that as long as you think positive thoughts, good things will happen, and you can get through anything. But sadly, here I am, the Valentine’s Grinch, to tell you that chemo doesn’t give a poop about warm, fuzzy, happy thoughts. It doesn’t care if you’ve had a horrendous six months of terrible crap thrown your way and really need a vacation. It will kick you on your ass until your jaw throbs, your muscles seize, your taste-buds disappear, your bones spasm, your heads spins and your nose bleeds. It’s one sick, ugly bastard.
I threatened to give up again this week. I said I wouldn’t do anymore treatments. This makes me feel like I have an ounce of control over what is happening to me, even though I know I really do not. Right now, the idea of putting myself through this again in two weeks seems like something only a severely mentally unstable person would entertain. I can currently sit up and walk through my apartment without screaming and crying, which is a marked improvement over a day ago. The fact that I’m typing right now seems like some sort of miracle, actually. Hopefully this means I am on the mend and will have an almost complete recovery by the next round. Because I need enough days to go by that I can wipe this week from my memory in order to do it all over again. And if that doesn’t work, I need one of you to hit me over the head and knock me unconscious and hook me up to the drugs yourself. Just remember to wake me up when it’s over, or that kind of defeats the whole purpose.
So it’s Valentine’s Day. The day of love. Valentine’s Day itself makes me a tiny bit queasy, but a lot of it is about chocolate, so for that reason, I can get behind it. And I suppose it’s also about love, and I am happy to say that I experienced a lot of that this week. From my dad’s cookies, my mom’s back-rubs, my brother’s drug stash, my sister’s hugs. My poor family had to sit by and watch as I cried out in pain and threatened to jump out the window, which I imagine must have been quite upsetting. And of course, my #1 Valentine, my husband, who sits with me in bed at night while I cry and says It will all be over soon. This is love. This is what matters. Giving chocolates and roses and expensive things is very, very easy. But this kind of love is the hard kind. And it doesn’t come often. And if you are fortunate enough to have it, you should thank your lucky stars. I do. I am the luckiest unlucky girl in the world.
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.
Sorry for the lack of updates this week and to all the many wonderful people in my life who have written to me and who did not receive a response. Please know that I love getting your messages and I feel like a really crappy friend for not being able to write back. Part of it has been because writing a text or email has felt like a herculean task for the last several days, due to a complete lack of energy. The other half is that, quite frankly, I have had nothing funny or upbeat to say. No positive spin. I have been a sadsack and a major Debbie Downer and I don’t wish to bring everyone down with me. So sometimes, it is just too difficult to respond.
I know that often people write and say “I’m not sure what to say”, but know that I still really appreciate those messages and I like to hear that you’re thinking of me. No one knows what to say. Cancer is stupid. It’s a real conversation killer. But saying something is always better than saying nothing. So in conclusion, please keep writing to me, never worry about saying the “right” thing, and please don’t think I’m a big ungrateful meanie for not always writing back. Thank you.
Although I don’t have many uplifting words of wisdom to share right now, I do still feel compelled to keep up with this blog, even through the dark times. There are now many people who actually follow it and check in for updates, which is pretty neat. I was even recognized by a young nurse at the hospital last weekend who had seen the blog, which made me feel like a total celeb (Hi, Gillian!). So here I am, to tell it like it is, and risk majorly ruining everyone’s pre-holiday cheer. You have been warned.
Cancer has kicked my ass this week.
It took all of 3 days into my chemo cycle to contract some sort of virus from hell. My legs and head have ached to the point that I wondered if it would be possible to cut them off and somehow float around without a head, or legs. I have been so tired that just thinking about going to the kitchen to get a glass of water feels like I am trying to solve some type of impossible mathematical equation. I have lost my typically ravenous appetite and as such, have lost a lot of weight. I have cried and screamed in agony, with my poor husband standing by, likely googling phone numbers for local exorcists. I have felt completely detached from everyone else’s reality. Babies. Work. Holidays. Vacations. Life. I stare at images of these things on my computer and feel like an alien, looking down from Planet Cancer, not understanding what it is I am looking at. And when I think that I still have many long months ahead of feeling like this, or worse, it makes me want to punch a hole right through my wall. Except I don’t have the energy to punch anything. So I have to just imagine it, which is completely unsatisfying, and nowhere near as bad-ass.
So that is my reality for the time being.
Right now, I don’t feel strong. I don’t feel a “positive” attitude. I don’t feel up to the task of inspiring anyone. I want someone to knock me over the head and wake me up when this is all over. I want to give up and throw in the towel. I want to be able to go outside for a walk, get my own groceries, go to work, and post boring photos on Facebook of me doing boring things. I want to be healthy and happy. I want to not feel like a burden to everyone around me. Mostly, I just want my life back. A simple, normal life, and nothing more.
Does anyone have any leads on this whole cancer cure thing? If you do, feel free to write to me.