A Doctor’s Musings on His Terminal Illness

Just want to share this NYTimes article, How Long Have I Got Left?, because it is so beautifully written and insightful. My favorite quote is:

“I began to realize that coming face to face with my own mortality, in a sense, had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”

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Decision-making post cancer

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This is Philadelphia, our new home. Yes, the boyfriend and I have left DC for a “new” city (in quotes because we used to live in Philly, so it’s not really new, but it’s new enough after four years away).

I am here to pursue grad school: a Master’s in Arts Administration, so I can one day change lives through the arts… or something like that. This has been a huge decision for me and mostly every day I question whether it was the right decision. I guess everyone does that with big decisions: buying a car, buying a house, moving to a new city, taking a new job, etc.

But I’ve definitely noticed that making decisions has become much harder for me post-cancer.

This might be an over share but I want to relay something my therapist and I talked about, which is my fear of loss, because I think it relates a lot to this topic. I have lost a lot in my life: my mother, my breasts, my “carefree” 20’s, my feeling of control over my body… the list goes on.

And with each loss, I become more averse to the feeling. Thus, when it comes time to make a decision, I think about everything I might lose in the decision-making process. If I choose one path, I am “losing” the possibility of all other paths. For instance, I have chosen to go to Drexel for a Master’s in Arts Administration, but that means that I can’t go to UPenn, a better school, for a certificate in Nonprofit Management! The horror!

It even trickles down to little decisions. I spent the summer working at Ford’s Theatre, where Lincoln was shot in 1865. A couple times, I was wandering through the museum making sure all the visitors were accounted for and I’d find abandoned tickets on the floor. I would pick them up to throw them away, but I’d weigh the decision very heavily. What WON’T happen if I throw this away? What if the visitor realizes they dropped it and comes back? What then?

During those moments, I would try to calm myself by saying, simply, “It ISN’T THAT BIG OF A DEAL. Throwing this ticket away will not be the end of the world.”

I realize I have to see things as more gray, not so black and white between having and losing. Making decisions is what advances life and I can’t let it cripple me.

Any other survivors experience this?

The Desire to NOT Die

When I was first diagnosed with breast cancer in March 2011, I thought a lot about dying. Now that I’m 2 years out, dying is moving further and further off my radar. The other night, though, I had a really intense dream about it.

I lived in some kind of futuristic society with a controlling government (think The Hunger Games), and I was going with a group of people to a big gathering. The group I was with (myself included) had previously decided that, because we didn’t like the government, we were going to wear bombs to the event and blow ourselves up in protest (think Al Qaeda).

Yes, it’s morbid. Don’t ask me how my subconscious comes up with these things because I have no idea. Anyway, on the way to this event, I realized what it actually meant to blow ourselves up and I started uncontrollably crying and begging the rest of the group to let me back out. I remember being so upset about the thought of dying that my insides felt like they were made of stone and I would be able to make myself so unwieldy that no one could push me forward and make me do the dark deed.

Gate to the wild (salvaje), Vilcabamba, Ecuador.
Gate to the wild (salvaje), Vilcabamba, Ecuador.

Then I woke up.

In conjunction with this dream, I’ve also been watching The Big C, the Showtime series about a woman who is diagnosed with terminal skin cancer. Besides the first season, during which I found the main character, Cathy, to be insufferable because she wouldn’t tell anyone about her diagnosis, I have really enjoyed the show and felt many of its moments to be relatable to my experience. Cathy searches for meaning in her life, tries to focus on what’s really going to make her happy, and, finally, tries to come to terms with her inevitable demise. I laugh, I cry, I sob, I cry some more. I marvel at the fact that this character is hurtling toward her death and doing it so gracefully. That’s Hollywood for you.

I’m not sure what the point of all this death talk is, except to say that, even though I don’t think much about death these days, I still really, really don’t want to die. I just don’t know how anyone can find peace with dying, though I know many people do, and one day I’ll have to, also. Hopefully, that will be in 80 or so years, after I’ve run a marathon, played Eponine in a production of Les Mis, and visited every continent.

 

 

YSC Holiday Party

Last night I went to Teaism for Young Survival Coalition DC’s holiday party. There was a large group of women there, which was wonderful and sad at the same time. I sat across from a young woman who was diagnosed just 2 months ago and is now in the midst of chemo. She did not seem to be doing well emotionally – she was often unable to put her feelings into words and kept asking if she’d ever be back to her normal self.

I’m in such a different place right now than she is, but I definitely understood where she was coming from. That feeling of being thrown, violently and against your will, into a vortex of doctors, decisions, information, emotions, fears, anxieties, baldness, etc. – it can all feel unbearable and insurmountable at times.

I was at a loss for what to say with her to make her feel better, but another woman at the table said something I thought was really profound: “You will get through this. And, after you do, you’ll be sitting at this table comforting someone else.”

For me, I’m at the “sitting at the table comforting someone else” stage of my experience. But it’s humbling (and infuriating and sad) to know that at any moment, I could be thrown back into that vortex. And I think that’s why I enjoy staying in touch with groups like YSC, because I still need their support.

Quote

Wanted to share this quote that I’m finding particularly inspirational today:

“You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”
– Eleanor Roosevelt

It so perfectly sums up a lot of what I’m feeling in this moment – the need to go out and challenge myself in ways that I didn’t consider before. After living through a horror, confronting fear, not on my own terms, I am inspired to confront fear on my own terms. Making changes, traveling to strange places, discovering myself – all are scary but all are my choice and controlled by me. There are so many positive changes I want to make that I think I cannot make – because of finances, fear, security, etc. But I can’t let fear hold me back. I was forced to face fear before and I defeated it; now it’s time to take back my life.

 

 

Happy Mastectoversary!

A year ago today…

I was in the hospital recovering from my double mastectomy, which was April 5, 2011. I almost would have let April 5, 2012 go by without a thought but my boyfriend reminded me it was a year since my surgery.

As I sit here now, typing this, I don’t have any sense that April 5th is a monumental day in my life. It probably was when it was happening, but not now. I read about all these young women who have prophylactic mastectomies and achieve peace of mind that they’ll “never” get breast cancer. I’m glad for them, but even after my double mastectomy, I still fear getting breast cancer. Again.

Is this normal? I tell myself it’s just being realistic. People get recurrences, even after major surgeries to remove breast tissue. I hear about it more than I’d like to. In the shower, I still run my fingers over my skin to make sure there are no lumps. Every time I feel a weird soreness or sharp pain or other strange sensation, I have a fleeting fear the cancer has returned.

Peace of mind would be great. But a year after my surgery I’m still not there.

And now this has turned into a really negative post that doesn’t accurately reflect my mood today (It’s Friday! I am going home for Passover! It’s spring! Team Peeta!) so I want to also say that this fear of cancer doesn’t consume my every day and paralyze me (except when I’m crazy like with the dizziness episode) – it just exists. I think it’s something I’ll live with the rest of my life. Maybe that’s just the difference between previvors who have mastectomies and survivors who have mastectomies.

February Drama

We’re coming up on the one-year anniversary of my breast cancer diagnosis. I’m not exactly celebrating for a couple of reasons… the biggest being the nerve-wracking week that I’ve had.

Last Wednesday, I came home from work early because I was too dizzy to function. Best way I can explain it is vertigo – and it all started when I woke up. It was extremely troubling and my oncologist set me up with a general practitioner to see the next week, but by dinnertime I felt much better so I didn’t make the appointment.

The next day I felt fine and the next. But over the weekend I discovered a hard ridge-like area on my right breast and started freaking out all over again that the cancer had returned.

On Monday I was able to see my oncologist and she was not at all concerned, but she let me get an ultrasound for peace of mind. It all looked normal. Phew – one disaster averted.

Then Wednesday night again I had dizzy feelings – not as much vertigo as slight nausea, lightheadedness, coldness, and not feeling “normal”. This morning I woke up still feeling nauseous, which went away quickly, but I felt a lot of pressure in and around my head – migrating from behind my eyes to the back of my neck and, currently above my right ear.

I am totally confused about what is going on in my body, but I know I don’t feel right and I am worried and scared. My immediate thought, thank you breast cancer, is that I have a brain tumor. Such a drastic conclusion for what are probably benign and uncomplicated symptoms, but that’s what having cancer will do to you.

To relieve my fears (best case scenario), I am having an MRI tomorrow.

I should be happy – I’m going to get this checked out, find out it’s nothing to be worried about, and move on with my life. But I’m scared %&*@less and it’s making me feel like a crazy person. I had surgery to remove the cancer, which was stage 1. No lymph node involvement, no signs of spread anywhere. I had aggressive chemo. There is really no reason to believe that I have a tumor in my brain, other than these weird dizzy spells, which could be caused by a myriad of other minor disorders.

My doctor again says she isn’t terribly concerned – my symptoms aren’t consistent with what she’s seen in brain cancer patients. More like a low-grade viral infection. My dad agrees.

But I’m having the MRI anyway, despite the professional advice and my own fears. I keep having these visions (not literally, or I’d be even more concerned about a brain tumor) of sitting at my parent’s house tomorrow as I receive the news that I my MRI showed a brain tumor. It feels like last March all over again, just thinking about how drastically my life is going to change (AGAIN) if that happens. The weather woman on my TV drones on and on about cold fronts and all I can think is, “The whole world will melt away tomorrow if I find out that I have metastatic cancer.”

What is one supposed to do with that news? And how is one supposed to live a life where every “off” feeling leads to the unshakeable dread that cancer has returned or spread?

I guess we take it one day… one test… at a time. My ultrasound was fine. My MRI will most likely be fine. And once those are out of the way, maybe I can stop worrying, at least for the next three months.

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.

Dear Diary

One of the joys of spending time at home is exploring my childhood bedroom and finding old diaries and j0urnals I kept through middle and high school.

My diary wasn't nearly this sparkly, but it was still full of the teeny-bopper spirit. (photo credit)

The other night I was reading one from my last year of middle school and pretty much every entry was about a crush on a new boy who didn’t crush me back. OMG! The pain in my heart was palpable through my written words – and I felt a familiar twinge of the unrequited love syndrome that was all-too-familiar back in my teenage days.

Why do I write about this now? Well, after I put down the journal and laid down for bed, I thought a lot about how priorities change throughout life, especially when facing a mega-crazy situation like cancer. Back then, I

probably felt like I was going to die if Lenny* (*names have been changed to protect my innocent crushes) didn’t like me back. Today, there are times when I feel like I’m going to die because of cancer. It just puts things in perspective.

Also makes me long for the days when things were simple – though I’m sure my 13-year-old self wouldn’t have seen it that way.