Stephanie Gilman Image by: Stephanie Gilman
Last week I think I hit a new low of sheer misery. The fatigue that comes with chemotherapy is truly cumulative, and with each new treatment, it is growing increasingly difficult to do any of the things I once enjoyed. Such as taking a walk. Or lifting my laptop. Or lifting my head. The tiniest things we all take for granted have become incomprehensible to me. Memories of the past.
Of a life I once lived, where my body would do whatever I asked of it, with ease. I feel as though I have been thrust into old age almost overnight. My bones ache when I try to move them. My body cries out for rest after walking up a few stairs. I wake up at night with hot flashes, my cheeks burning, thanks to the menopausal effects of chemo. Creases are starting to form on the outer corners of my eyes. My stomach and face are bloated constantly from all the drugs, making me look like I am five months pregnant. I can’t follow a basic conversation without losing focus, or feeling like I need to shut my eyes. I am an old lady. At the ripe age of 28.
It has been difficult for me to look in the mirror lately. I don’t like what I see. A bald, puffy face, with red patches all over my cheeks and glossy eyes. Is that really me? It is hard to feel healthy or strong, when the image reflected back at me is anything but. Lately I am starting to feel as though I will never get my old self back. I can’t imagine having life in my face again. Or having hair. It seems like appearance should be relatively low on the list of things to feel bad about, when you’re dealing with all the crap that comes with a cancer diagnosis. But it is proving to be one of the biggest challenges for me. Looks aren’t everything, but when you’re already feeling just about as low as a human can feel, it really does add insult to injury.
It is hard for me to look at pre-cancer photos of myself now. I feel very disconnected from the girl I see. She’s pretty, and healthy, and happy, and completely unaware of what is about to happen to her. It’s as though I am looking at someone else’s life, even though I know she is me. Did I really do all those things at one time? Did I really look like that? Did I really have hair? I want to go back into those photos, just for one minute, just to remember what it’s like, to be happy and pretty. To soak up those moments. Because they are starting to slip away from me. I hope that eventually I can start feeling better about what I see in the mirror. View my reflection as an image of a brave warrior, rather than one of a sick cancer patient whose body has been continuously cut, poked, and poisoned. I don’t want to be that girl who cries when she looks in the mirror. I have never been that girl. I refuse to let her win. And anyone who knows me knows I always get my way.
Read about what made Stephanie feel grateful about on the next page...
March 30, 2013
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
Read about Stephanie's reconstructive surgery on the next page...
April 21, 2013
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.
Read about how Stephanie accepts the fact that bad things happen to good people on the next page...
May 22, 2013
It’s pouring outside really hard right now and thundering loudly. Whenever it thunders, I think of how my mom used to tell me not to be scared, because it was the sound of my grandfather bowling in heaven. I would fall asleep, listening to the booming thunder, imagining my grandpa getting strike after strike. It is so wonderful to be a child, and believe that anything is possible. To be so easily comforted when you are scared. All you need is to hear a simple tale, a made up story, and the fear goes away, and you are safe again.
Yesterday, I did my radiation simulation. Since the radiation will be near my heart, I had to perform a breathing exercise to see if I could hold my breath long enough to move the heart out of the radiation field. This involved biting onto a plastic tube and having my nose plugged with a clip. While lying in the CT machine, I had to breathe in and hold my breath. The tube locks, and you are no longer able to breathe until it is released, or until you let go of the panic button.
At first I felt a bit claustrophobic and anxious, since I don’t like feeling confined to begin with, let alone with my ability to breathe stifled. But then I started imagining how I must look at that moment which amused me, and then it was over. It turns out I can hold my breath a lot longer than I thought, so I continued my streak as superstar cancer patient. While lying down, the tech also gave me four tiny tattoos so that I can be lined up precisely with each treatment. I had read some people say they found this part painful, so I was a bit apprehensive. But it was nothing and I didn’t even flinch. Between that and my blood test via my port later that day, I had 5 needles, and I realized it didn’t even phase me. Something that used to petrify me is now just part of my normal routine.
Prior to my radiation training, while I was waiting in the reception area, I saw a little girl. Cute as a button, she looked to be around 7 years old. She was clutching her stuffed monkey. Her mom complimented my turban and asked the girl if she liked it, and she nodded bashfully in agreement. Your hair is still hanging on for now, the mom said to her daughter. Shortly after, she went with her parents into one of the rooms that said “Caution: X-Ray Machines Inside” on the door. Since this was the area where you prepare for radiation treatments, I imagine that’s what she was doing. It didn’t take long before I heard the little girl crying and screaming from down the hall. Her mom left the room for a moment and paced the halls, clearly stressed, while her husband stayed with the girl. She continued to scream at the top of her lungs and I sat there helpless, listening, until my name was called.
My heart really ached for this girl and her parents. How confusing this must all be to a young child. I wish I could tell her a story like the thunder story. Give her some reason as to why this was all happening that makes it fun and makes all the pain go away. But cancer is not thunder. The threat is real. The pain is real. And the fear and confusion that comes with all of it is the same, whether you’re an old man, a 28 year old newlywed, or a 7 year old little girl.
Sometimes there are no magical answers. Sometimes it’s just that life is unfair, and some of us get dealt a really shitty hand, while others may not. I wish there was a better explanation than that, a story you could tell your children when they ask why bad things happen to good people. I wish things could be different. But for now, I am comforted by the sound of the rain, and happy that I am alive to listen to the scary thunder.
Grandpa just got another strike.
Read about Stephanie's attempts to get her old life back on the next page...August 27, 2013
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. Ha. Ok. Clearly I need a nap.
Stephanie Gilman's journey in photos
Stephanie Gilman's quest to reboot her life
#lifereboot: Living life after cancer