I had saved Parenthood on my DVR. Yes, I have the TV taste of a 40 year old woman.
One of the main storylines this season is the cancer diagnosis of one of the main characters, Julia. I haven’t found it too troublesome so far and actually find I relate to slot of it.
Tonight, the episode began on Christmas Eve. Julia is running a temperature and she ends up in the hospital with sepsis shock. Something about her white blood cells being shot because of the chemotherapy. As I sat in my chair, I hear my mom saying “should you be watching this?”
What I didn’t realize that I was buried under a blanket subbing uncontrollably. I couldn’t catch my breath, but all I know is I was sobbing and wailing as the characters were discussing why Julia was in the hospital on Christmas Eve.
Sometimes I think that I can handle it. i assume it will be fine. And the crying will trigger something else and then I’m just a sobbing mess. THe holidays are tough, especially with cancer making everything so uncertain. My social worker today said the fact that I decorated my apartment for Christmas and planned a trip to Alabama to spend time with my family showed the uncertainty wasn’t winning. Making plans around the holiday showed I wasn’t completely afraid of what could happen or what they meant.
As long as I avoid television shows about cancer and the holidays.
I remember Saturday trips to the Beauty Shop with my mom. There was the shop with a hug row of dryers, women propped under each one as the smoked a cigarette. There was the lady with the beauty salon in the basement of her house—how this was legal, I don’t know—which reminds me a little bit of the beauty shop in Steel Magnolias. Every one in awhile, I remember going to the barber shop with my dad and marveling at the Playboy magazines stored in the ashtray.
These memories returned yesterday when I went to the beauty shop with my mom so we both could get a hair cut. It was one of those shopping mall Hair Cutttery-places with more staff than customers.
Truthfully, I thought I was done with going to the barber or beauty shop. In late July, I started losing my hair and I assumed it was never coming back. But it turns out that the chemo change I made in July meant that I was now using non-hair loss chemo and now my hair was going to actually grow back.
My hair came back even silkier and smoother than I had before. It was also more grey. And, oddly enough, it came back with a natural part. Very strange. My facial hair also returned, albeit splotchy and inconsistent.
When mom said he needed a new haircut, I decided to forgo my usual barber and just go to the place by the grocery store. All I needed was a trim, after all.
Turns out, she gave me a pretty good haircut. I didn’t really need to explain why my hair was so strange (the bandage covering the front of my neck was the tip-off) but I ended up getting a pretty good new ‘do.
What better way to get attention and sympathy than to join online cancer support groups, surrounding yourself with other people going through the same thing. Except, of course, you don’t have cancer. You just want some attention.
A story in the Washington Post looks at the phenomenon of (mostly) women who go online and pretend to have cancer. They go to great lengths to support this persona, including getting an oxygen tank and creating a video. The phenomenon of people lying about who you are online is nothing new, but it is still sort of shocking when you read about it.
When I started this blog, I was afraid of it turning into a “cancer blog,” which of course is exactly what it turned into. It was inevitable, I guess. But it is a reminder of the risks of chronicling a fatal disease in a blog and on Facebook. Ultimately, people may become disinterested in my sad reality—and who could blame them—or question whether it is unnecessarily exhibitionist.
What bothered me about the women in the WaPo article is that I could give anything to not have cancer to blog about. While I would probably not start a blog about cute cats or unicorns and rainbows, I would love to be able to have a personal blog where I don’t have cancer, but I can’t avoid it. I couldn’t even fake NOT having cancer at this point.
My first job after finishing law school was working for a legal clinic for the poor. Specifically, I helped run a program for poor and indigent people with HIV/AIDS. There were many times, while filling out applications for Social Security Disability, where I wondered what it would be like to be on the other side of the desk. Now I know.
In the past few months, I’ve written my will, an advance medical directive, a living will, an application for long term disability, and an application for Social Security Disability. All that time working with junkies and prostitutes and former drug dealers was finally paying off.
It’s all very confusing and I can’t imagine trying to do it without a lawyer if I wasn’t already one. Being a lawyer has been described as having an advanced degree in filling out forms, but the truth is that filling out the forms in a proper way really is the difference between the pros and the amateurs. While filing for LTD, I knew that it hinged on the definition of “work” in choosing the day my disability began. For SSDI, it was declaring that I wanted fast-track approval because of my diagnosis.
Writing the will and medical directives were probably the most difficult because those hard questions that I laid at the feet of my clients were suddenly mine. When you are writing about your own life and health, it’s very different. The advice I used to give was now applying to my own life.
So I’m starting to venture out more. I’ve been pretty self-conscious about how I look given the effects of the chemotherapy and, well, the cancer.
But at some point last week, I took a picture of my “I voted” sticker and realized I had a moustache and a goatee. When did that happen. Then I looked in the mirror and realized that hair had returned to the top of my head. It’s less grey, much softer, and even has a bit of a part.
So I decided it was time to go back to church. My sister, Lisa, was in town and never been to my church. So now seemed to be the best time as ever to head to church and see all the people who’ve been supporting me.
The first challenge was the clothes. Even though I’ve bought new clothes, I have a huge closet of clothes that just don’t fit no matter who much a cinch my belt. I also have a huge bandage that stretches across my throat and neck. Is there any way to really downplay that?
A white t-shirt helps somewhat. But I also decided I’d take advantage of my favorite “euro” look: a scarf. So I put on a casual jacket that fits better than most and then wore a coordinating grey scarf. Out of place in DC? Probably. Out of place in Paris or Amsterdam? Never.
It was great to go to church and share all of my friends and support there with my sister and the rest of my family. It was a great experience and very spiritually moving.
For my next venture, I’m heading to a fundraiser for the gay journalists. It sets off a whole new set of clothes problems, but I’ll figure it out.
Friday is Chemo Day. It’s a lot like casual Friday, except with tubes and needles and anti-nausea medication instead of jeans. Since early August, every Friday morning is devoted to having blood drawn, waiting for results, taking anti-nausea medication, and then taking a five-minute push of toxic drugs meant to shrink the size of my tumor.
I get a little curtained area with a recliner, a flat-screen television with cable television, and of course an IV pole. I was actually one of the very first patients in the newly renovated infusion center at Georgetown and I can attest that it is a vast improvement over their previous digs.
But in the end, it’s a pretty depressing place. As the patients shuffle through the unit looking for their own little room, there is an inevitable sense of dread and optimism. uncertainty and routine.
Today was a pretty easy day. The blood was good and the pain was minimal. I have a port embedded in my chest which means that instead of searching for a vein in my arm, they just stick a needle in the port and—voila—blood and a site for the chemotherapy.
The port was one of the first “it’s come to this” moments that underscored I really had cancer. But, in fact, it is a blessing. The search for veins in my arm to take a blood sample or input chemotherapy turned me into a neurotic mess. One day, it took six sticks and three nurses before they could find a vein. With the port, you feel a pin prick and suddenly there is access to a vein.
I usually take my iPad and catch up on the newspaper and my email (thank heavens for free wifi throughout the hospital). The staff couldn’t be nicer and they all know who I am. But it’s a depressingly busy place. Most days, every infusion bay is being used. All those people having toxic, life-saving medicine inserted into their bodies. Young and old, men and women, rich and poor.
Just another Friday.
This isn’t a naked attempt to get more attention, I promise.
But I’ve realized recently that one of my weaknesses in the past is that I was one of those terrible people who buy a card for someone, but then never send it. When I heard someone was sick or experienced a death in the family, I was lousy about following up even with the most basic gesture.
So I’m very fortunate that there are a lot of people in my life (and the lives of my mom and sister) who are much better about these kinds of things. Over the past few weeks, I’ve received a bunch of cards and emails from my mother’s friends who I’ve never met, but who have taken the time to send a nice letter or card. I’ve also received a beautiful flower arrangement from a friend who lives out-of-town. I also got a pumpkin from a friend from church.
These gestures help remind me that I’m not going through this alone. On an intellectual level, of course, I knew that already. But these simple gestures—often from people I don’t even know—are a reminder that there is a large world of people out there who are willing to act.
It also makes me feel a little guilty for all those cards I never sent.
I just didn’t want to talk about it. I didn’t want anybody to see me. I’d become one of “those” people. I’d become someone who seriously has cancer and looks like it and my body feels like it. So I clammed up.
For someone who spent a year detailing my cancer diagnosis and treatment, it’s odd that the moment that I need support the most, I shut down. But I’ve realized that it’s time to come out of the closet one final time and acknowledge that my cancer has recurred and things have gone downhill fairly fast.
In early summer, my doctors discovered that a lump on my neck that I had hoped was just lymphadema was actually a new tumor. Worse, the tumor was located in a place on my neck which made any surgery unrealistic. Given all the radiation I’ve had, more radiation isn’t an option. So now I’m on chemotherapy and hoping that it will shrink the stuff in my neck, even though it isn’t going to make it go away.
It’s been a lousy summer and early fall. Trips to the doctor, a horrible nightmare ER visit, a couple of surgical procedures. I’ve lost my hair and have become one of those cliched cancer people who wears a baseball hat in public. I’ve lost even more weight. I have a difficult time talking—although the chemotherapy appears to have helped in that area—and swallowing.
So there it is, the ugly truth.
Now, if you aren’t completely depressed—and you shouldn’t be—realize I’m moving ahead. This isn’t the time to shut down, but instead embrace the reality and live life. My family has been amazing. Jack has become a regular Florence Nightengale. Mom has been here on her inflatable bed for much of the time and Lisa has come for long weekends. My church, as usual, has been a source of constant support and comfort.
I’m going to start to blog again and, hopefully, it won’t always be as sad and shocking as this post was. I mean, the weather is turning beautiful. Fall is my favorite season. I’ve got some new clothes in a smaller size I want to wear. The hometown team is in the playoffs. I’m surrounded by family and friends around the world who care about me. There’s lots to be thankful and grateful for.
Well, I’m glad that’s over. My birthday, the anniversary of the the official diagnosis of my cancer, and the birthday of this blog is now over. And I survived. And I feel pretty good about it.
Writing the essay was very cathartic. I’d been wanting to write about this whole experience, but found the undertaking overwhelming. The essay provided the best chance, so far, to try to put into words a little bit of what I was thinking about after a year.
Originally, this blog was supposed to end on Friday. I thought about just ending it, but then realized that the year hardly went as planned and that there are still more stories to tell, more pictures to post, but hopefully no more robot attacks.
Jack comes home in 15 days and I’ve made room in the closets, the storage unit, and the bathroom for his stuff. It’s going to be a big change for us both and I”m looking forward to a shake-up in my routine. I’ll have to get used to watching bad TV and strange science fiction movies, but a guy has to be adaptable.