Archive for November, 2010

Embraced

11.22.2010

I don’t remember what had sent us to the hospital that particular time. Sometimes it was a spiked fever, sometimes it was uncontrollable pain or vomiting. But here we were again, my brother’s thin body racked with the perpetual pain he endured at the end of his life. Jeremy hated lying down and usually prefered to get out of bed and shuffle around the room, even if he couldn’t really go anywhere.

As we were waiting for the doctor to come and tell us what the next steps would be, I sat there with that familiar feeling of helplessness. Should I talk? Should I be quiet? I searched him for a cue. He started feeling nauseous, and I knew that meant he needed silence.

He leaned over the bedpan heaving. The violent movements jarred his aching skeleton, causing him to wince. I saw the sickness wash over his frail body.

I couldn’t stand to see this suffering. I hated doing nothing, so I rushed off the chair and firmly embraced him.

“I got you,” I told him.

He stopped heaving. His face relaxed. He looked at me.

“It stopped,” he said with wonder. “How did you do that?”

I was equally surprised. “I don’t know. But I’m so glad.”

My brother died a few months later, on November 23, 2007.

Last Wednesday, I had my very last treatment. It went well except for a minor stir when the nurses and doctor’s office took a good hour to sort through whether I had finished getting treatment last time (“You’re done! Go home!”), whether I had two more treatments (“I’m so sorry. I know you were looking forward to being finished.”) or whether this was, in fact, my final infusion. Nothing, it seems, can be without some drama.

The next day, I left bright and early for the Life Beyond Cancer retreat in Austin. I learned about it from a blogger/twitter friend Jody Schoger and a Facebook friend Beckye. One of them invited me initially, and hearing about it from the second convinced me I had to go.

I hesitated to travel so soon after treatment. I knew it would follow this last Herceptin infusion, which for many people, is a non-event. Compared to chemo, they are right. Nonetheless I get a 24 hour Herceptin flu. Yeah, I know how to have a good time.

What an incredible way to transition into post-treatment survivorship. The first friend I made on the shuttle to the conference center shared my love of running and the Mexican rock band Manà. We are Scrabble geeks and have kids with similar ages. I identified with her in so many ways, and then she matter-of-factly told me that she is in the midst of a recurrence. For a split second, I froze up when she told me. But I moved past my fear, enjoying her humor, warmth, and conversation.

The retreat focused on healing mind, body, and spirit. There was yoga, qi gong, healing walks, delicious healthy food, and spa treatments. The speakers were survivors and nurses who spoke about health, sex, survivorship, and advocacy. I confess that if I know I am meant to be inspired by a speaker, my inner adolescent is poised to come out and act beligerent. These folks all passed my B.S. test and touched me, as the room filled with the laughter and tears of recognition.

Socially, we were able to let it all hang out. Not only were we no longer fish out of water, we all, as one woman put it, swam in the same aquarium. I didn’t have to explain my compression sleeve. I didn’t have to worry about folks assuming I was all better when they heard I had just finished treatment. Nobody pushed their food around their plate during meals, avoiding eye contact out of awkwardness, as you shared some of your harrowing tale.

There were women who had gone through or were still in the midst of all kinds of cancers, with their journeys taking a lot of different shapes. There seemed to be a shared determination to live authentically. We understood each other’s PTSD and could easily fall into conversation with any other participant. I stopped freezing up when women told me they had metastatic disease or had dealt with recurrences. They became role models for living courageously and fully. It was both comforting and exhilirating.

Saturday night was November 20 on the Gregorian calendar. But it was 13 Kislev on the Hebrew calendar, the anniversary of Jeremy’s death. We light remembrance candles for our loved ones at nightfall.

Jeremy died around 8 PM on 13 Kislev three years ago. After he took his last breath, the crowd of friends and family who had gathered to be with him stepped outside his little apartment to give his parents and his wife some quiet last moments before the hospital came to take his body away. It was his wish that his body be studied to benefit the next person who had his disease. He had what is called an “orphan cancer,” meaning that not enough people had it for there to be much useful information. As we stepped into the clear night air, tears streaming down our faces, we noticed the full moon shining above us. It gave us comfort, since Jer had always had a deep connection to nature.

Since the Hebrew calendar follows the moon, I looked up Saturday night as the retreat was drawing to a close. The sky was not clear, but I could see the light of the bright full moon from behind the clouds. I was with April, one of the first people I met through my blog. What a world, we were saying, that we could now spend time together in real life.

My brother was the one who got me online. After he died, I needed more of him. I needed pictures, connections to his friends who had become my own as we shared the difficult and precious last months of his life. One of them told me to get a Facebook account. I did. The rest, as they say, is history.

My life online brought me to this retreat via Jody and Beckye. My life online gave me friends like April, who I now stood with underneath the 13 Kislev moon, sharing the story of my brother.

And I, too, felt embraced.

Maybe Jeremy saw my unsteadiness as I headed into this new phase of survivorship. My love for him certainly led me here.

I relaxed into this feeling and heard the words, “I got you.”

This is a video one of Jer’s friends made. Jeremy reads a poem he wrote at the end of his life, as he came to terms with his own death.
The images are of his life’s work and passion.


I miss you, brother.

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Posted in Survivorship | 16 Comments »

Living Wholeheartedly

11.21.2010

I learned so many amazing things at the Life Beyond Cancer retreat this past weekend. I can’t wait to tell you about it all.

The first thing I have to share is Brené Brown‘s TED talk. She came and spoke with us last night and it was wonderful. Her research is about shame and its relationship to vulnerability. She uses her research –– thousands of interviews with people about these subjects –– and uses it to think about what it means to live wholeheartedly. She talks about compassion and connection and belonging.

She talks about the valuable of vulnerability, the ways that our culture discourages us from learning to be vulnerable. This was particularly powerful at LBC, since she was speaking to a roomful of cancer survivors. If anybody knows how difficult and important it is to be vulnerable, it was us.

Please take 20 minutes to watch this video. She is a great speaker. As she says, a researcher-storyteller.

Here is a link to her book. Let’s read and discuss at some later date. Maybe a twitter book chat?

I can’t wait to hear what you think.

Posted in Survivorship, Treatment | 6 Comments »

Infusion Day Fashion

11.17.2010

This may seem like a shallow post for my last day of treatment. I should probably be blogging about the deeper meanings of this time. I think my emotions are being processed on a deep, nonverbal level right now. I will surely share the insights I glean from this experience in future posts.

In the meantime, a perhaps frivolous yet meaningful matter that’s taken me 18 infusions to figure out.

What is the ideal fashion for infusion day?

The port is awkward. It’s in my chest. I don’t want to undress to have it accessed. People in chemo are often hairless and need to keep their clothes on and the chill off.

I’ve figured it out, Chemobrothers and Chemosisters.

First, start with a shirt whose neckline can stretch downward to reveal your port.

If you look closely, you can see the plastic wrap over my numbed out port.

But when this stretches down, your neck is really exposed. You feel naked and cold.

So, I knit myself this adorable neckwarmer. It pairs perfectly with the shirt.

If you need a little punk rock vibe to help you feel like a cancer ass-kicker, I suggest pairing it with a leather biker vest.

This would have been awesome with my chemohawk.

And voilà! Easy access without the chill.

It took me 18 infusions to figure this out. Hope you can benefit from this important wisdom.

Posted in Fashion, Treatment | 10 Comments »