Weekly Happy: Bursts of Sunlight

There are many positives to living in Washington, DC, and the excellent metro system is one. Today I was taking the Yellow Line from where I live in Columbia Heights to King Street in Alexandria, Virginia. I rarely ride the Yellow line out of the District, so I was pleasantly reminded about the above-ground bridge over the Potomac River. For a brief minute, you are out of the dark underground tunnel and able to see the beautiful sights of the DC waterfront. Today, this bridge crossing was particularly smile-inducing, because of the sun, blue sky, and crowds of people out and about enjoying the last of the cherry blossoms and the trails hugging the river. Of course, just as you’ve become hypnotized by the Washington and Jefferson monuments and warmed by the sun, you drift back underground, but it makes that brief moment all-the-more magical.

Someone was asking in the Young Survival Coalition Facebook group if anyone had advice to get her through treatment, and one thing I might offer would be to enjoy the small moments when you feel happy. They might be few and far between, but they do happen and it is worth your time to bask in them before they disappear. One such moment, for me, was the week after my first chemotherapy infusion. I had just left my follow-up doctor appointment and was walking through a warm, May day in DC, amazed at how good I felt despite all that was going on. In that moment, I felt strong enough to get through the whole ordeal, and I still remember that happy feeling to this day.

Oh, I guess I should also mention that, since my last post, I hit my two-years-cancer-free mark. It was April 5, 2011, when the tumor was cut out of my right breast. Yay!?!

Growth

Finally got a cord to upload pictures from my camera (thanks, dad, and your freakishly large box of random wires) so here’s a little chart of my hair growth since ending chemotherapy. September 1, 2011 was my last infusion.

October 4, 2011

October 9, 2011

October 17, 2011

October 25, 2011

November 11, 2011

Novermber 19, 2011

December 9, 2011

January 5, 2012 (in Hawaii!)

January 11, 2012 (a couple days before this post)

A very Cancer-y week

On Monday, I had a follow up appointment with my oncologist – the last chemo follow up. In all honesty, I feel pretty awesome already. My hands are a little bit itchy and my thumbs and feet are still tingly from the neuropathy, plus I’m still bald, but I feel great. Thrilled to be finished with chemo. Thankful that on this Wednesday night I’m not dreading another infusion that would have taken place tomorrow. No needle in my port, no taste of metallic saline in my mouth, no weekend of feeling tired and worn down and off. Just normalcy… well… as much normalcy as one can feel after being diagnosed with breast cancer and undergoing a summer o’ chemotherapy.

Did I mention that I was followed around by a camera crew at my follow up? No? Well, I was. Yep, the marketing people at GWU asked me if they could film a little profile about me for marketing purposes, to post on the website and play on TVs throughout the Medical Faculty Associates building. I’m okay with being the poster-child for young adult cancer, in fact, I’m flattered they asked me. As with the pictures Rina took of me, a video of this experience will be interesting to look back on. Plus, the videographer said if I’m interesting enough (if?) he may want to turn it into a full-blown documentary!

Which brings me to my next point: tonight I attended a screening of the movie 50/50 that was followed by a Q&A with actor Seth Rogan and writer Will Reiser. In the movie, Seth Rogan plays Kyle, friend of Adam (Joseph Gordon-Levitt) who is a 28 year-old diagnosed with a rare spinal tumor. The movie follows Adam from diagnosis through chemo to surgery, all the while exploring his relationships with Kyle, his girlfriend, his doctors, his parents, and his therapist. I thought the movie was wonderful – seamlessly weaving comedy with drama and showing a, for the most part, authentic young adult cancer experience.

Many scenes really hit home. When Adam hears the doctor say “your cancer” for the first time, everything seems to dissipate around him and the rest of the doctor’s words become jumbled. Many of his friends don’t know how to respond, and say the “wrong” things to him, as in “My uncle had cancer too… he died.”

(L to R) Doug Ullman, Livestrong CEO, Seth Rogan, and Will Reiser

The one thing I didn’t like about the movie was the moment when Adam’s doctor comes out after his surgery and tells the family “He is going to be okay.” One issue for a lot of young cancer survivors is the fear they carry for the rest of their lives of recurrence and new cancers. To wrap up the movie with such a simple statement makes everything seem black and white – like cure is extremely easy to achieve. Cure might be possible, in some sense, but young adult cancer survivors will never truly be “okay”. Cancer forever changes you. I realize they had to end the movie somehow and it didn’t bother me enough to negate the rest of the movie’s positive points, but I did need to comment on it.

Go see 50/50. It’s worth it. You’ll laugh and cry, even if you have no experience with cancer.

Tomorrow night I’m going to participate in a young adult cancer patient group at GWU, so it’s a cancer-filled week! I’m looking forward to a time in my life when I won’t have to say that.

 

A nightmare

The other night I had a terrible dream. I haven’t remembered a lot of my dreams for the past couple of months, which is strange because there’s so much craziness in my life, I’d expect my subconscious to be working overtime. But this one was vivid and made me wake up in a cold sweat:

Photo credit: me and the Pixlromatic app

I was living in a run-down apartment, old-fashioned apartment, reminiscent of

those in Northeast Philadelphia. Our electricity was flickering and it was getting late, so I went down a set of stairs to lock up. The entrance I was locking up was guarded by several layers of doors – a screen, metal bars, a glass sliding door, and maybe more that I can’t remember. Before I could lock everything a man showed up at the door. He was dressed in a police uniform but I felt an inherent sense of danger – he was coming to kill me. I worked on the doors as fast as I could to fortify the entrance to my apartment but I couldn’t get any locks to fasten fully. I was panicking but kept shutting the doors and turning the locks as far as they would go, to buy time. At one point he even reached his hand through the bars on one door, seeming to help me shut and lock another door. Strange, but I continued figuring he was teasing me. When all of the doors were shut I scurried up the stairs, but I had such trouble with the last few steps – it felt like I was on a fast-moving escalator that kept going descending before I could get off. Finally I made it to the top step and could see into my darkened apartment, but I knew the man was getting through the doors below and coming after me.

That’s when I woke up and of course my head immediately thought about what the dream means in the context of my life. My big battle right now is against cancer. I’m doing all I can to lock it out of my body, but my biggest fear is that it’s still there and that I’m going to find out in the future that it’s invaded me, metastasized to a point that I can’t control. The never-ending steps remind me of how I feel right now – my last infusion is so close and I can see the end of treatment but I know things will never quite end. I might never reach that top platform of being completely cancer-free in my life.

New-ropathy

I guess I thought I’d be the woman who doesn’t get all the common chemo side effects. Everyone told me I would “do so well” with chemo – I’m young, in good shape, have a positive attitude, and so on and so forth. Well I’ve learned that being young, in good shape, and so on and so forth does not preclude you from feeling common chemo side effects, no matter what anybody tells you.

My current battle is with peripheral neuropathy, which has manifested in me as a strange, pins-and-needles-like sensation in my fingertips and, less prominently, the soles of my feet. It’s not painful, just annoying because I feel it everytime I type, hold a pen, or do anything else that normal people do several times a day with their fingers. Everything I read says it’s reversible, but I also worry sometimes that it won’t ever go away. It’s been pretty constant since my second Taxol.

And while we’re counting treatments, I want to proclaim that I have JUST ONE LEFT! September 1st marks my last infusion and I am so, so, so ready to be there. I’ve heard from a lot of women that reaching the end of treatment is sometimes hard, and I can understand why that would be – you’ve spent several months being monitored closely by a medical team, you’ve endured countless side effects and emotions, you’ve received well-wishes and extra love and care from family and friends and then… bam! You’re not really a cancer patient anymore. You’re a survivor… supposedly… until you get a recurrence… but that’s a whole other story.

While I see the sadness that can come along with ending treatment, I also think I’ll be ecstatic. First and foremost, my hair will start growing back! I’ll have normal work hours, be around most weekends to hang out with friends, avoid being pricked and prodded every week, and I’ll be able to schedule my final reconstruction surgeries and emerge in 2012 with new boobies and a new outlook on life. So close…

She’s Out!

Well folks… I did it today. I left the apartment and walked to work sans headcovering.It was the first time I’ve ever walked the streets of DC bald, and it’s basically the first time I’ve been in public bald for a full day (there was the time I went to the Dr.’s office in NJ bald, but that involved getting out of the car and walking through the parking lot). I consider this a BIG milestone!

That's pretty much what I look like... right?

It felt great and I didn’t get as much attention as I thought I would. Maybe I was being selfish – although I think it was more self-conscious – in thinking that people would literally be crashing their cars and bikes straining their necks to see the crazy bald girl parading down the street. But no one really even did a double take. Shocking, but great to know! I’ll have to do this more often.

Marriage and The Last AC

I am happy to report that I had a wonderful time at my brother’s wedding. Though I had a ton of anxiety leading up to the event, after stepping off the plane in San Diego all I felt was pure excitement at the thought of sharing the event with my family and especially my brother and his wonderful fiance.

The rabbi officiating the wedding was a great speaker. She kept giving people time to be “present” – to really experience each second that passed and be in the moment, not thinking about the past or future, but about what was happening right then and there. It felt very poignant for my situation. One of the things I was so anxious about was that I wouldn’t be able to be present in the moment of my brother’s wedding – that I’d feel sick or be harping on my past or future treatments. But I truly was able to be there and feel the moment and dance at the reception and enjoy my family’s company, and it was a great weekend! I invite

My parents and I at my brother's wedding reception. I was rockin' my real hair wig!

everyone reading my blog to take a second and really feel present in the moment that is taking place. The past is over; the future can wait; now is the most important thing and you don’t want it to flutter by without taking notice.

Of course, now I’m sitting at home the night before my last AC infusion and I’m feeling anxious all over again. The thought of the syringe filled with bright red Adriamycin being pushed into my veins just makes me want to vomit. How can it be that I’m hardly halfway through my treatment and I’m already sick of it? Tomorrow, as the drugs course through my body, I promise to try very hard to visualize them as good, cancer-killing forces rather than toxic, disgusting, side-effect causing forces.

Insomnia and other Side Effects

It’s an off-chemo week and yet I am still unable to sleep tonight, 2am on a Saturday. Sigh. Could be that I took two Compazine today – let me explain.

I have a mild case of oral thrush – basically a mouth yeast infection. Yeah, yeah, it sounds totally gross but it’s a common occurrence for people on chemo and mine has just meant my mouth feels slimy and I have some white stuff on my tongue. My doctor prescribed these big white tablets that I have to dissolve in my mouth for 15-30 minutes, and while they’ve been working, they made me a bit nauseous. At first, I took Ativan to help with the nausea – though my doctor prescribed it initially for my anxiety, it also helps nausea. Then I trolled the interwebs and learned all about Ativan addiction and got scared and switched to Compazine instead, a drug I was originally prescribed for nausea in the days after my chemo.

Every drug has a side effect, I guess (in fact, one of Compazine’s side effects as listed on the website I linked to is “fine, worm-like tongue movements… whatever that means). Hard to accept because up until now in my life the only drugs I’d ever really taken were Tylenol and here and there an antibiotic.

I’m also coming to terms with the fact that “bald from chemo” in my case does not mean completely, Samuel L. Jackson style bald. It means bald with delicate, dark peach fuzz all over my head. This is almost harder than just being completely bald, because unless I keep these rogue hairs always trimmed down, I can’t make it look like I meant to do this to my head. Did others have this kind of baldness?

My confidence is building everyday and I did have fun wearing a wig to work on Friday, but it might be a couple days before I post a picture here.

26 years on Earth

I’ve prided myself for being pretty strong throughout this whole experience. I only cried a couple of times, mostly back when I got my diagnosis. But these past two days have been extremely hard and I can’t say that I feel very strong at this moment.

I didn’t think losing my hair would be this difficult. But as I sat in the bathtub this afternoon and watched what little was left of my once long, brown, curly locks swirl toward the drain I just broke down. Getting out of the bathtub, I reached for a hair tie to put around my wrist and then put it back, feeling stupid. I have no hair to tie. I just have a patchy head with tufts of hair that are refusing to quit until the very last second. I wish they would go away so I could just be completely bald and not look like what I imagined the velveteen rabbit looked like sitting in a trash heap waiting to be burned.

I’ve been out in public but I don’t know how to act. All day yesterday and today I had a lump in my throat that literally made it hard to breathe. I thought my throat was swelling – allergies, maybe – but I think instead it’s anxiety. I don’t know how to be bald in public. What if someone pulls off my scarf? What if little kids laugh at me and ask their mommies why that woman is bald? What if people pity me? Make fun of me? Laugh at me? Look away from me, embarrassed to stare?

Today is my actual birthday and I want to celebrate and feel good about another year under my belt, but I’m terrified to leave my apartment. I know I should walk with my head up and not care what people think. It’s all about confidence and inner strength. But it’s easier said than done and I can only hope that, in the days to come, I find the strength I need to get through the summer like this.