Tuesday, March 26, 2013

Saying Goodbye

Last week after my oncology appointment, my Herceptin infusion, Brian's platelet donation, and my precious 50 minutes with my therapy lady, Brian and I wandered around Dana-Farber in search of Julia. She and I had missed each other several times in between all of our different meetings and even the people at the front desk were trying to help us connect. Brian could tell that I wasn't going to leave before we found her, and finally, we did.

When I first saw Julia, she was having her vital signs taken on Yawkey 9, just like every patient does before the first appointment of the day. Julia looked drastically different than the last time I saw her. She was in a wheelchair, unable to walk or even sit up straight. One side of her face looked especially weak and hollow and she couldn't open one eye all the way. Before she saw me, I noticed that she was vomiting into a small bag that she could barely even hold herself. When I saw that her vomit was red, I wanted to run away and cry.

Obviously, I didn't (probably thanks to my last seven months of training to not run away and cry while at Dana-Farber). Instead, I greeted her wonderful husband and the interpreter that was helping them. It was crowded and despite that Julia reached for my hand and motioned for me to stay next to her, I said that I would sit in the waiting room until the nurse was done.

When Julia's vitals were complete, they moved her straight to a private room with a bed in the infusion suite. It was the same kind of room in which I got my third and fourth desens chemo rounds, so it was familiar to me.

When we entered Julia's room, she was alone. The blankets were pulled up high to her chin and she looked like she was sleeping. Before we could turn around to leave and let her rest, she woke up. I sat down on her bed with her and she held my hand. Her hand felt thinner, softer, and colder than it ever had.

Julia's cancer is deep into her brain and it was clearly affecting her ability to think straight. She spoke in Vietnamese to me, smiling as widely as she was able. A few minutes later, I could tell that she realized that she was speaking a language I could not understand. She laughed and apologized. I just nodded and held her hand, trying my best not to cry. Eventually, I gave up, and tears fell from my eyes even though I found the strength to keep my facial expressions unchanged.

When Julia's husband joined us, he gave me his usual gracious and enthusiastic greeting that always makes me happy. He lit up even more at the chance to meet Brian. Julia's husband's English isn't great, so the conversation was still far from smooth, but at least now Julia and I could exchange basic ideas.

Julia asked me the question she has asked me the last three times I have seen her -- Where is your cancer? On the bone? Then she points to her chest. Just like last time, she unbuttoned the top of her shirt to show me her tumor. And just like last time, I couldn't look away. I also couldn't believe how much bigger it was now than it was a few months ago. That huge protrusion from Julia's tiny innocent frame made me want to scream from the rooftop of the Yawkey building how much I fucking hate cancer (excuse my French, but I really do).

I tried to lighten up the conversation a bit and that worked for a while. We talked about Julia's trip to Vietnam and how well her daughter and son are doing in school. I told her what I've told her a hundred times -- that I will not lose touch with her family. I know I won't.

Then we got into a topic that clearly had me confused. Julia started talking to me and Brian about sex. Yeah, I was as surprised as you probably just were. I tried, and failed, to follow what Julia was trying to tell me so I just made a joke about how she is supposed to be a proper Catholic lady (she's very religious) and here she is giving me sex tips. It was a bad joke in English and I'm sure once translated, it was even worse. Julia laughed hard anyways.

Eventually Brian, the one with the common sense, chimed in from the chair behind me. He quietly told me that Julia was telling us not to have any more children. Bingo. That's exactly what she had been trying to say. I hate that topic, and truthfully, would have much preferred an awkward conversation about sex.

After some more struggle to understand each other, we arrived at Julia's clear belief that pregnancy and hormonal shifts would be bad for me. I don't think she has scientific data to back up her theory, but she was very adamant about it. With a lump in my throat, I told her that we would not have any more biological children so she need not worry about me. She was very pleased with our decision.

Julia's timing on this topic was unbelievable because just a few hours earlier, I completed a survey to see if I would be willing to participate in a clinical trial for young breast cancer patients who want to get pregnant again.

The first sentence of the survey was an unwavering statement that being pregnant has not been shown to increase cancer recurrence. It even said something about pregnancy maybe even lowering the chance of recurrence. Huh? Talk about confusing. I had no idea what to think, but ultimately, I declined to take part. The study would involve stopping the Tamoxifen after 18 or 36 months, trying to get pregnant, and then going back on the Tamoxifen. As I wrote on the paper, I'm just too scared that being pregnant contributed to my cancer. Dr. Bunnell adamantly denied that it did, but even his certainty didn't change what was in my gut.

Now let me be clear, I am not, in any way, suggesting that pregnancy causes cancer. What the heck do I know? (Nothing.) I just feel what I have felt since back in August -- that after all of this, it wouldn't be good for me (not you or anyone else) to have another biological child. It's just so strange that out of no where, Julia thought the very same thing.

Julia received her very last cancer treatment the afternoon after Brian and I left her bedside. Then she spent several days in the hospital before the doctors gave her a few weeks and sent her home with hospice.

This weekend, I spoke with Julia's most amazing daughter. We decided that I would bring them dinner on Wednesday night this week. I've done my research and tomorrow after work, I'll place a dim sum order for take out. I'll also order myself something I can eat, like white rice and broccoli, because that dim sum indigestion still haunts me (even though I'm sure the heartburn was chemo-related).

Since the day I agreed to help on Julia's case, I knew that tomorrow would come. Of course, I never anticipated having cancer myself when it did, or that I would have come to care so much about Julia and her family. Nevertheless, the day is here and I have to decide what I'll say to her that last time we meet. So I've sat here, sometimes tearful, trying to figure it out.

Here's what I decided. It doesn't matter what I say. If you've got a sense of humor like mine, you might make a joke about the fact that Julia and I can't understand each other's language anyways so it actually really doesn't matter what I say. I'd laugh at that. But now that I think about it, the last few months have taught me a whole other reason why it doesn't matter what I say to Julia tomorrow.

It doesn't matter because I'm not a goodbye person. I mean that when it comes to small things like parties (I'd sneak out of every one without saying goodbye if I could) and I mean that when it comes to big things. I learned about the latter kind just last month when I had a rare opportunity to say goodbye to someone -- Brian's grandmother -- while she was still very alert and aware of what was soon to come.

The few days before our visit, I had planned what I wanted to say to Brian's Grandma when I saw her for the last time in the hospital. It was short (yes, sometimes I can be brief if I practice), and I practiced. But when the time came to say it, my whole plan just didn't feel right at all. With some anxiety about whether I should abandon the plan, ultimately, I decided to. And thank goodness, I don't regret that decision.

I don't regret it because what felt right in those last few minutes with Brian's Grandma was just holding her hand, looking at her and seeing her smile, hearing her and listening to her tell us to get home safely, like she always did. What felt right wasn't something I had rehearsed, because she already knew all of that. What felt right was kissing her like I would see her again.

Maybe this is all just a form of denial and if it is, I'm OK with that for now. Because even though I really need to start some work, I've thought about all of this for a while, and I've landed in this (somewhat safe-feeling) place...

I don't want to ever need a final goodbye to tell someone what they have meant to me. I'd rather have done that long before -- sincerely and repeatedly -- and not only with my words, but much more, with my actions.

So I don't know what I'll say to Julia when I leave her for the last time tomorrow night. I'll probably just hold her hand and let her speak in Vietnamese if she is even able to speak at all. And then I'll drive home and probably give my sleeping kids another kiss goodnight.

One day, I'll tell my kids about Julia. Most importantly, I'll tell them about how strong and brave and kind she was. And I'll tell them about how, when "Lisa" (my former colleague) and I took on Julia's pro bono immigration case in August 2011, she told us what she wanted --  her children to have their father in the United States with them when she passed. We knew that achieving that goal was next to impossible (our "mentor" attorney actually left out the "next to" part when advising us on our proposed legal approach). But we went ahead anyway, and worked tirelessly for what Julia wanted. Somehow (mainly because of sheer stubbornness), we succeeded.

When I drive away from Julia's tomorrow night, that's what I'll think of -- that I get to go home to my family and cry in my husband's arms if I need to. And Julia's kids can do the same with their father, who is here because Lisa and I believed (maybe just subconsciously) that what we do for someone while she's alive is much more important than what we say to her in a final goodbye.


  1. You wont be alone on that ride home tomorrow. Know ill be thinking of you and Julia and so will many people with heartfelt thoughts and prayers.

  2. You couldn't have said this better. There are better ways to say goodbye over a period of time than try to say it all in a last parting. I have always felt this way, and my warm thoughts go with you as you visit Julia's family tonight. You did the best thing you could do, to get her husband into the country to be at her side. What a kind and wonderful person you are. xoxo

  3. Although you & Julia do not speak the same (native) language, my guess is that you do all the communicating you need to when you look into one another's eyes and hold her hand. Take comfort and pride in the fact that you have given her one of the greatest gifts you could - your time and expertise to keep her family together and safe. Think of the peace that has brought to her and her family and that will help you through the darker days ahead. xoxo